Sunday, March 30, 2008
Stephanie Mastini: 'My two battles with cancer'
Kevin Spacey's former sister-in-law Stephanie Mastini has suffered two bouts of breast cancer in less than two years. Here she gives a graphic account of dealing with her illnesses - and offers advice to women everywhere.
Steph! So glad you're on the mend. Tell us the history of your cancer problems leading up to the recent serious health episode.
It all began on a relaxing sun kissed day. I was enjoying the sun and applying protection lotion when I suddenly felt a small pea-sized lump in my right breast. I knew immediately what it was. It didn’t move like the other cysts I had felt before. I have always had an uncanny way of knowing my body.
I waited a few weeks to gather my thoughts and get prepared. I should have acted immediately. Act quickly. After a few weeks, I asked my internist to feel the lump. She didn’t think I had anything to worry about but had been my doctor for years so she knew me well, and sent me to have an immediate mammogram. Immediately after the test they sent me down the hall for an ultrasound. I had started the process of acceptance. I was told that I would have to have surgery to remove the tumour. We didn’t know if it was cancer for sure. The doctor said it was very small and to go on my last minute decision to book a ten day Caribbean cruise.
So off I went. For all I knew I would never have the chance again to go on that solo cruise, so I didn’t hesitate to recover with a tan. Actually the truth is, I didn’t want to put my life on hold. And the doctor didn’t seem concerned, given the size - she told me to go have fun. I went and had a ball though I was a bit tired at times.
On my cruise I encountered complete strangers that I now realize were angels that took a human form. They all told me that I had an incredible aura surrounding me that was filled with goodness and healing light … and that I would be alright. How did they know? Ironically I was calm and felt no anxiety in those 10 days. When I returned I was told I had cancer and within two weeks I was given a lumpectomy and than began radiation. I couldn’t complete the radiation due to burning of my skin and the cancer meds made my bones ache terribly. The oncologist assured me I would be alright without the medication.
That was in April of 2006.
In November of 2007, I felt another lump right above the last one, only this time the doctors wouldn’t check it out. They only said that it was scar tissue. I knew better. I went to the oncologist in December hoping to get some answers but he only had his assistant feel it, and they both brushed it off.
The Holidays were upon us and my trip to San Francisco delayed my immediate action, I was disgusted but pulled myself together and tried again to go to another surgeon. I even went to have a follow-up mammogram on my left side where they had done an MRI biopsy six months previously, but they refused to do the right side. I was in tears and angry that they brushed me off saying that the oncologist needed to approve it. I called him from the centre but his assistant informed me that he wouldn’t give his consent: this I determined was from my change in medical status.
I even went to the second surgeon I had foolishly changed to months before, but she also refused consent, citing that she couldn’t since she had not seen me in six months. All bureaucratic insurance bullshit. I was aghast. All the radiologist could do was apologise, and tell me that it was protocol. They couldn’t do it. I had to wait weeks because of the Holidays and the way the system works here, it takes weeks to get in to see a specialist.
In January, after the exam, she said the lump had to be taken out. I was not going to let that happen. I wanted a biopsy or MRI first. So, I went back to my original surgeon in February of this year and by the look on her face, after her exam, I knew. She did an immediate biopsy in her office and I had to wait 8 days to find out the results. That was by far, the longest eight days of my life. She informed me that having a mastectomy was my only option since I did have cancer AGAIN.
This time it was twice as large. I sat in her office and tears streamed down my face. The nurses brought me in a big pink teddy bear and told me as they hugged me that they would be there every step of the way for me. I felt like burying my face in that Teddy bear.
They informed me that if I felt the need to call them every day, that I shouldn’t hesitate. I proceeded to read every new article and book about the subject of reconstruction since I had immediately opted to have it simultaneously with my mastectomy. The surgery went well with three specialists in the OR working on me at the same time. I awoke with pain that I can’t describe.
My stay in the hospital was five days, and most of the time I was so drugged that I can’t remember them taking my pain machine away from me the first 24 hours! Seems I was so out of it that I would push the magic button and then pass out, wake up in agony, so I couldn’t stay on top of the pain. They decided to go another route and start pumping pain meds into a port.
Those five days, lying in my bed, were life-changing. I realised that life is not only short but so very tenuous. I had become a cancer survivor with two bouts of breast cancer in less than two years. I was told that it would take one year to get through the whole process. They still have not told me if I need chemotherapy. I see my new oncologist next week, but the surgeon did say that I had clear margins and benign nodes (she took out two more) and she felt that the size was too small to have the treatments. I heaved a sigh of relief but I still have not obtained the definitive prognosis. I am now in the process of obtaining my new breasts. It is painful and sometimes I get a bit down, but I tell myself everyday how lucky I am to be alive.
Tell us something about the hospital.
I guess if you have stayed with me this long then you can understand how incredibly frustrating the whole ordeal was. I remember telling the anesthesiologist what my surgeon told me to tell him. “Tell him you were still talking and awake and holding a conversation with me on ten mg of versed before your last surgery. That’s enough to drop a 300 lb man out on the floor. So you remind them that you need lots of drugs!!”
I had a private room and can only remember that the day before I left I got quite feisty and sought out the head of surgery. I told her how disgusted I was with the neglect I had been experiencing from many of the nurses and aides. I slowly left my room, and stood right at the station where she was talking to another doctor. I stood there stoically and the other doctor tried to dismiss me with a hand gesture to disappear. He had not met me yet.
She had already encountered my stubbornness previously and we had become friends. She knew that I wasn’t going anywhere so the chief stopped her repartee with her colleague and listened and respected my feelings. She was kind and caring. I won over the nurses and aides after that conversation, and they didn’t ignore my medical issues after that. I made it clear that I was paying their salary. They weren’t paying me.
I didn’t have any family or advocates helping me, until one day a woman came in and announced that she was the hospital advocate and she was there to help me. She informed me that my mother had called her from NY and asked for her to watch over me. She was kind and caring and she visited me often. She even drove me home from the hospital. I was so grateful I felt myself tear up as I said goodbye to her when she dropped off at my home. She gave me valuable information for me to read about the resources there were out there to help me including the American Cancer Society (ACS). Than I found out that there were angels watching over me once again.
What is health care like in the US?
If you are lucky enough to have insurance there are still so many gaps and waiting periods. It also depends on the state. The movie Sicko by Michael Moore was right on the money. I never realised how different a commonwealth state can be until I moved to Virginia. When I resided in WA and NY, I received medical care at a much higher standard. They provided the best care for anyone, whether you were on disability or had a top of the scale insurance plan. I never encountered the GHASTLY lack of professionalism and waiting periods that I did here.
When I was caring for my father in Virginia for over five years, I realized that the only way that anyone could get even a small iota of reasonable medical care is if one had an advocate. Unfortunately I did not. So I made it my business to do my home work before I entered the hospital and interviewed many health agencies through the help of the Medicare system. I compared home care health agencies and lined one up before I came home.
I have care five days a week. I had to fire two workers for their incompetence and lack of professionalism, but I finally have one aide that comes in and truly enjoys her work and shows compassion. She does a bit of cooking, cleaning, laundry, shopping, and in general, is a life saver. I am very independent, and it was a very difficult transition. I felt guilty leaving the dishes in the sink at night for her to clean in the morning, but I realize now that the only way to get well is to listen to your body and accept the help with dignity. I love my nurse and she comes everyday.
I only get this care because I fought the system. I found out what I was entitled to and pursued every avenue. I feel such empathy for the wounded ones that don’t have this strength and perseverance. They fall between the cracks.
If one doesn’t become aggressive in this country, than you will not get the care you deserve.
I also had the ACS that I would call to answer any questions or just to talk. I remember many a night scared and alone and full of questions. I would call the hotline YME. There is always someone out there if you want to find them.
I was touched by the agency that provides me with rides to my doctors. It’s called Lee’s Friends. It was started by a teenager suffering with leukaemia. Her father was a physician and she left a legacy when she lost her battle with the disease. She set up a non-profit agency and is completely run by volunteers. Some are survivors; some are just kind souls that have known other survivors. They are not allowed to even accept gas money. It has restored my faith in Mankind and the knowledge that the hearts of many are quiet in the deeds they perform for the Forgotten Ones.
How are you feeling now and what is your prognosis.
My nights are still very difficult and I have hit a new snafu. I attempted a chore that I wasn’t ready for and fear that I have “sprung a leak”. I appear to be deflating on my left side. My body is absorbing the saline but it is very disconcerting when you can’t count on a doctor to be there for you and he dismisses it as “nothing to worry about”.
Apparently, he says, it isn’t serious and I see my plastic surgeon next week. I will be getting my permanent implants in a month or sooner. That is how the process is done.
They continue to inject saline every few weeks to fill up the temporary implants to stretch out and make room for your new breast. I am not making light of this process, it is painful and very uncomfortable. I have to sleep on my back and I continue to take pain meds when needed.
I have to use my humour and say that I am deflating like my tire on my Volvo. What a strange coincidence that they both occurred simultaneously. I attempted to drive on Easter, but the pain I encountered from turning the wheel stopped me and I noticed my left tire had started to deflate like my left breast! I got as far as the corner and than turned around after I filled my tank and my neighbour filled my tired with air. Talk about irony!
I am tired a lot but I am getting better everyday. I listen to relaxation tapes and concentrate on the fact that I will be putting my home up for sale again soon.
The only way to get through the storm is to walk through it as gallantly as possible. I have learned to accept help and not push my body yet. I want desperately to get back in my studio but my energy level is still low.
I eat an anti-cancer diet which consists of non-white food of any kind and plenty of organic veggies and fruit. I do not consume meat unless it is USDA organic, since my cancer is oestrogen driven. I have not changed my Mediterranean diet, it is the best way to get all the nutrients and vitamins to get my strength back and maintain my health.
I can’t tell you how important it is to concentrate on what you ingest, and hydrate with lots of water and green tea. I force myself to get out of bed some days, from lack of restful sleep.
I am enjoying watching movies to relax, and I have been continuing my writing and drawing. La Vie en Rose was spectacular, and I recommend it. It is riveting and touched my heart with sentiment. I could relate to Edith Piaf’s life as a misunderstood artist. When they found her on her death bed her face was wet with tears. She never regretted her life, and she lived every moment of it with passion and soul. She was a stubborn and incredibly talented artist that will always be remembered as the “little sparrow” that had a sprit that could not be broken.
What would you say as advice to women.
I remember when I felt that first lump. I promise you fellow women that fear is not an emotion to be ashamed of. There are organisations out there that will assign you an advocate to be a buddy and come with you to have your YEARLY mammogram.
I met a mother and daughter at the breast centre that went together every year. I told them how wonderful it was to see that camaraderie, I know that if you need the help, it is out there. Call the ACS. They not only helped me with my fears but provided me with a gift of a pretty leisure bra and some little pillows to help me sleep. I had a woman that visited me from ACS at my home and she was kind and helpful and gave me a vast amount of hope and resources.
I firmly believe that the most help I received was from strangers. I continue to be amazed daily by phone calls from women that want to help. I was even provided a new companion that is a retired nurse that said she would go with me to my doctors’ appointments. This was arranged by Lee’s Friends. I was truly touched. She is going to be a great help. I have had to fight dragons to get what I need from some of the health care industry.
I recall my plastic surgeon’s comment when I asked for more pain medication. He is frighteningly handsome, under 40. He replied: “Do I look like a Pez dispenser.” I replied back: “Stick out your tongue and let’s see”. I refuse to be bullied by any doctors. He thought he was a smart ass and I made him laugh but also proved to him that I wasn’t going to allow him to intimidate me and he wrote out my prescription, without missing a beat.
Randy [her ex-husband and Spacey's brother] sent his best wishes to you in a message to Arcati. I know you've been at odds over his book. Will you reconsider contributing to his memoirs?
Randy and I have a mutual admiration for each other. We have remained in touch. He called me when I was out of surgery. Randy respects my feelings and understands that I would rather not be interviewed by Mr [Jack] Ewing.
Your sister Francine and her fiance Thom. Have they been in touch - I thought Thom was a minister of the Church.
I have learned many things the last few weeks and have grown immensely. Thom and Francine have proven that actions speak louder than words. They claim to be Catholic oblates. I have learned that it is better not to feed into their hypocritical religious masks they adorn. I can only feel sympathy for their lack of compassion. No, neither one of them has called me or written. Maybe one day Francine Mastini (AKA Jayne Fury)will understand the true meaning of empathy.
When you've recovered what do you plan to do?
Live. Love, and laugh. I also plan on travelling. I have seriously been dreaming of the day that I break out and show the world Stephanie Mastini. I was a little drama queen as a child on stage. My NY neighbourhood was a theatre. I was always the lead role in the plays we put on. I know that my personality is strong and maybe people need to get to know me to truly understand who I am. I have been told many times by professionals that I should take up acting or modelling or both.
I once sat on a plane with a well-dressed sophisticated woman. We talked the whole time on our non-stop flight to Seattle from NY. After the flight was over she handed me her card and told me as she grabbed her belongings that I was made to be a star and I had all the makings to become an actress. She said “you got it kid” and she handed me her card. She was emphatic about having me come to her famous acting school in Seattle. She was the director of the school. She also taught classes. I was stunned and flattered.
That is a dream that I have never pursued. I have so many talents still that have not been publicly revealed. I plan on honing my skills as the artist in many venues. Maybe even public speaking. Best of all, I have learned that I am fearless and I can accomplish anything I put my mind to.
It’s never too late to try something new. I would love to be an artistic diva!
Tell us something about your other creative work ...
I have been working on my memoirs and I plan on taking them to a publisher one day. I am a cat with nine lives and I am out to prove it. You will be seeing some newer style of my art very soon. I am excited to start my new life and become as active in as many creative aspects on a daily basis. Veni, Vidi, Vici.