I am back from  my New Years trip to the Bahamas I needed to be by the ocean and have my toes in the water and in order to let the salty tears flow. I struggle these days to experience the love of friends and family. I struggle  to hold on to hope that my life has a tomorrow and that I have some sort of a future- being present is not always  easy for me I do what I can  because if I don’t I am overwhelmed by the reality of my life- I feel like I have no right to express any pain hurt or negativity at my life and that I should count my blessings because I am still here. The fact is I am confused- I am sad and hurt and in pain- I do not feel like I am the package any longer and that my status is a deal breaker- I know relationships are not all that but imagine that having one is not an option- that sometimes is a deal breaker for me. I have friends whose words of love do not match their actions- I feel like a  need a tune up- and then I realize oh yeah- I start radiation next week- I will get a tune up then. Sorry to be a bummer it is not always easy to be the glowing vision of clarity and light and I am not always feeling that side and lately not so much. My heart is still healing and in pain from the recent break up before the Holidays- I now accept people treating me like I am  less than important something I would never have accepted before- it seems I am settling for negative attention  and I  blame you cancer for bringing me to this place- for beating me down- breaking my spirit- chasing people away out of my fear for dying on them. I blame myself for not being able to be here in this place right now and  to not feel this pain- this reality- yes- in 11 days I will be 16 years since my diagnosis and 7  with stage four cancer- am I blessed? I am here- is that a blessing? Is living with cancer day after day realizing  the only people  who get it are dying- is that truly living? Sure I travel- I work every day- I have my daughter- I have lovely friends- I am aware- and capable- and I am walking every day in my own skin towards what I can only hope is a more pleasant place-

2012- I pray I am able to work through my own humanness to  be more present- to be aware of  my blessings and lessons to embrace them-

To everyone suffering I feel you- I hear you- I get it-

Love all ways-

B

So where am I? It is mixed- I am single- the person was dating for 2 year decided that I was not long term relationship material this happened two days before Thanksgiving and I took myself to the beach to be with nature and regroup and  put my energies into fighting my cancer. When I returned from the beach my tumors had shrunk significantly but I still needed surgery as they were impacting my mobility in my left arm and caused pain. I am facing my own demons right now mostly those around my choices in life and why I  repeat myself and when and where did I start compromising my happiness and my heart. I am not sure when this happened but I am sure it is related to the 16 year fight to stay on this planet as well as everything that it takes to make that happen. I try very hard to not wear my cancer on my sleeve and on the outside but sometimes it is difficult especially in relationships as I know it is exhausting to deal with day in and day out. It is like the movie ground hog day but you are the one waking up every day dealing with the feelings- fears-around being ill. I have had to fight for myself with all of the healthcare organizations as well as dictate my treatment in some instances- had I not I assure  you MD Anderson and others would have  cut my life short drastically. The healthcare system creates a cycle of helplessness and hopelessness and financial burden and  is not something any of us like me will ever recover from. I work- I have insurance but even then the system has drained my resources in more than one way.

Mental health? I  do my best to stay as focused in this moment right now as I can- I realize I could snap if I lived in the place where I am feeling this 24/7- I only need to feel it now. I realize that being in my inner circle is not easy- I realize I need to be active in my life in my health- in my mental health- in my spiritual life-and in helping others or I will back slide. The Holidays make  it even more intense but I am blessed to have a group of  people who love me  and are present for me and some have been the entire 16 years. I am grateful for that and for their generosity and their love.

I start radiation after the Holidays- it scares me and I worry how my life will be impacted by this but I have no options but to walk into it like everything else with my head held high and with the belief that I can do this.

We the people who are living with stage four cancer are an anomaly and we need to be heard- there is a growing number like us out there and we may look healthy may  appear ok and we may be just putting one foot in front of the other because we know no other way. We live to survive and I want to  live to live- I want to have a dream again-I want to know what that feels like. I pray for all of us and all of you who support us that we will find a better way to walk together in life and in love in 2012.

Let the power of our love binds us- keep us- protect and comfort us all ways-

 From the beginning of my life, I have been looking for your face,
but today, I’ve seen it.
Today I have seen the charm, the beauty, the unfathomable
grace of the face that I was looking for.
Rumi

Happy Holidays.

Becky

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……

So reality- 

My medical bills have cleaned out my savings- and my financial situation is looking grim

I am still working and  very much enjoying what I love to do

I still feel healthy

I still look healthy

I see my daughter twice a week

My x is  hooking up and my daughter will  have another extended family ( moving in)

I have my things in order and I go in-between fear and acceptance

Chemo –  two weeks on one week off until tumors grow or change negatively. 

So what now? I am here still- I noticed that I miscalculated as well- 2012 will be   16 years since my fist diagnosis and 7 since stage four. 

So what to say to you that may bring you some sense of peace- enlightenment-comfort. There is hope-  doctors are not gods- you can impact your life in all ways- you do have the power to heal- you have the power to live- your mind and your soul has immense strength-love is all there is- our humanness is our downfall and our gift. You matter- we matter-and when we drop our flesh and bones we can still impact the greater whole. 

I am not perfect- I am not whole- I am broken- I am a human body who has a soul- my soul is everything though I am not-I am a part of my soul the part that has a hand that reaches outward and the part that hurts- that feels- that experiences all that my soul no longer can- my soul holds my being and yours lives with mine. 

I am grateful for the light- the darkness- the scars- the tears- the laughter-I am passionate about the dance-only those who are able to move with me  are floating forever in my heart- 

May I be inscribed in the book of life- May I be remembered and may you blessed with all that is  your highest good. 

May I be forgiven for all of my sins and indiscretions-may I be cleared of all that is not of you-May I be able to remain in the present with you.

Do you know what the music is saying?
“Come follow me and you will find the way.
Your mistakes can also lead you to the Truth.
When you ask, the answer will be given.”

Rumi

I am holding steady here while doing my best to stay present  keep it simple and try not to personalize life. My challenges go from just trying to  remain stable and also being present  for myself and my loved ones especially my daughter. I am still taking chemo  pills daily for two weeks and off for a week my nails are detaching and my skin is dry but overall I am good. I am doing very well actually. My struggles? Realizing I am responsible daily for my health-finances-and my emotions- I find family and friends disconnect more and more and I find myself ok being connected to the one or two people who are inside the scope of my life as I live it breathe it and experience it. truth is- it is rarely about me anymore- maybe it never was- and maybe it never should be. It is  about us.

Be present for us.

Love and light-

Becky

When I am conflicted and full of my own angst I go in so that I can come out- today I am in and not ready to join you in your dance that rains on my heart-

I just need to be here and feel your light breathe life back into me-

In hopes of meeting you in the sun-

Love-

Becky

My Mother passed away two years ago on March 31st – my brother the eldest of the 7 of us,  nicknamed her moon. I  am the middle of her 7  children.  I was with her up to her death though she waited for me to leave  in order to die.

This posting is for the moon.

“That moon which the sky never saw
even in dreams
has risen again”
— Mawlana Jalal-al-Din Rumi

Beverly Ann Matthews was a perfect storm that moved  us all under the light of the full moon that was always present in her eyes.  She was the ying and the yang- the good and the evil- the love and the hate- the mother and the child- she was what we all are and what we will all become- the light that is ever present especially on the darkness night.

May you always move us and may you always shine-

Blessings to your soul and gratitude for giving me life-

Becky

Welcome and entertain them all!
Even if they’re a crowd of sorrows
Who violently sweep your house
Empty of its furniture
Still treat each guest honorably
He may be cleaning you out
For some new delight!

The dark thought, the shame, the malice
Meet them at the door laughing
And invite them in
Be grateful for whoever comes
Because each has been sent
As a guide from the beyond

Rumi/The Guest House

My bone and Ct scans came back as stable- I am grateful- I am blessed- I am honored to be here.

Love and Peace-

Becky

I was in Hawaii the day after the Tsunami and I felt a strange feeling come over me it was all about surviving and not dying and preparing for life not death. Every day and every night I would  experience deep gratitude for being alive and being so lucky. How blessed I am.  For me it is enough to be here now to be able to write this to  look at my daughter and  hold her and hear her singing in her raspy voice that I adore. I am still here and still vital and how essential it is to believe in life and surviving a day at a time in all ways.

I do not know what I cannot know but I do realize that it is about  taking this time living it and loving it – this time. I continue to be un sure if I will  accept taking more chemo especially injections- I am ambivalent about medicine and not completely trusting of the insurance companies the drug companies and huge healthcare organizations. My Md Anderson experience has created distrust and I am more cautious  and more involved in my  care than ever before because of it and I guess that is a good thing. I do not believe that everyone involved in my treatment is  invested in my life and certainly not the  insurance companies and maybe not even Md Anderson- I am awake- and it  is about time.

I embrace you for this moment and for all you have given to me- the light and the darkness have  revealed your face and against the night you glow and within my body you beat along with my soul- it is time that we embrace both the lightness and darkness  both help us remain balanced and both bring us closer to this time.

Light and love remain here- all ways-