|
|
SPEECH GIVEN BY MELISSA DANNER ROSS
Welcome to all of you, Breast Cancer Survivors, Family, Friends, Support Persons, Educators, Physicians, and all that I have missed. My name is Melissa Ross. Many of you know me as Missy, which is my nickname. I’m here tonight to represent Survivors of Metastatic Breast Cancer. Last year, I came to this symposium. It was my first time after the recurrence of breast cancer. I had metastatic disease. I didn’t fit into the Survivor category anymore. The symposium was wonderful, but did not mention or support survivors living with BC mets, as metastatic breast cancer is called. I came home in tears and told my husband, Norm that I wasn’t a survivor anymore and I could never go to a breast CA symposium again. I am a member of the FCC Breast Cancer Support group, organized and run by Jane Garvin and Bev Grubbs. I find much support in this group. I was their first “metastatic” member and they accepted me with open arms. After my experience at the symposium, I shared my feelings of not being a SURVIVOR. They gave me much support. Jane is one of the organizers of this symposium. She asked me to speak this evening. I am honored and pleased to share my thoughts and experiences. Thank you for inviting me. I am also involved with the SOS (Survivors Offering Support) group at FMH, which is run by Denise O’Neil. After my experience here last year, I felt like I needed some connection with a support group for woman with BC mets Denise connected me with an amazing woman with BC mets in Annapolis named CJ. She created and coordinates a support group for woman with BC mets. I am a part of this group through email, and CJ and I correspond often. This summer, CJ wrote an essay of her experience, along with other women with BC mets, when they went to a symposium. They felt just as I did last year. The essay gave me much support and I know I am a survivor every day. I now want to tell you my story because I think many parts of my experience will speak to all of us and be helpful. My journey began in December 2001. I was living in Charleston SC at the time. While we were home for Christmas, I found my breast lump. I knew it was “different”. I have fibrocystic breasts so my breasts are lumpy, bumpy and dense. My mom had a lumpectomy for a pre-cancerous breast nodule. I was 37 at the time so I started mammograms at this age. They were always “normal” including the one that I had after I found the breast cancer lump. My understanding is that the lumps are hard to detect because of the denseness of the breasts. I was 43 and had this cancer growing for at least 6-8 years with “normal” mammograms. If you have fibrocystic breasts, and even if you don’t have them, and feel a lump that is different, or your gut just says to pay attention to this, insist on pursuing it, especially if you have fibrocystic breasts. Ask for an MRI and a surgical consult for a biopsy if your gut tells you this is something to pay attention to. I went to my gynecologist in January 2008, after a “normal” mammogram result. She said, “You have lumpy, bumpy and dense fibrocystic breasts. Start wearing the right bra size. Your bra size is too small. Start taking Vit E and evening primrose oil”. Then she said, “Melissa, you tend to be a worrier.” So I went home and did my research on fibrocystic breast disease. It was like reading about myself with lumpy, bumpy and painful breasts. I went and was fitted for my bra size and yes I was wearing the wrong size. I started taking Vit E and primrose evening oil. I tried not to worry and went on with life. After all, my mammogram was “normal.” The area that my lump was in was very painful. This was a curse and a blessing. A curse because it was fibrocystic breast pain, so more convincing that was all it was. My malignant lump was in a large piece of fibrocystic tissue, which I learned in my pathology reports. Another curse is the “wives tale” that breast cancer isn’t painful. Not necessarily true! The blessing of the pain was that it intensified in the following months; therefore I wanted it “out of there”. I was so concerned about the pain when I had my lumpectomy that I said to the surgeon before going into surgery, “will you take this out even if it isn’t breast CA”? Continuing on with my journey, Norm and I were back in Frederick in mid-June for a visit with our families. One night, I was awakened by the presence of God. I have never before or since had an experience like this. All I can tell you is that I was bolt awake from a deep sleep and I felt a presence around me and heard these words out loud, yet not spoken. “You have to go and have this breast lump taken out”. The presence slowly left and it was quiet. I immediately woke up Norm. He gave me support and said, “we will pursue it immediately when we get back to Charleston”. God was speaking to me so I went to see my gynecologist and she said “yeah it is a lump so I guess you should see a surgeon.” Why she took this attitude with me I’ll never know. Her Mom had just died on breast cancer. I went to a wonderful, compassionate surgeon. He did a fine needle biopsy aspiration and told me that he would call me soon with results. I got the results almost 2 weeks later because my findings were “not definitive.” He told me that the pathologists had worked very long and hard, but were challenged and we would go ahead with the lumpectomy with sentinel node biopsy. I was ready. By now it was August 2002 and for various reasons I didn’t have the surgery until September 12, 2002, 9 months after I found the lump. Too long!! My pathology found Stage II infiltrating ductile breast CA, estrogen positive & HER-2-NEU positive. There was no lymph node involvement. I recovered from surgery and went back to work in 2 weeks. I am an RN and I was working on a busy cardiac unit. I was ready to fight this disease with all I had in me. For the next 9 months I was in treatment, chemo then radiation. As many of you know, it is a challenging journey. The hardest part for me was that about ¾ through chemo I went into a “moderate episodic depression.” How could this be? I’m always positive and see the glass half full. I was so naive that I thought it was the 3rd type of chemo that I had just started. It started as a deep sadness, which progressed quickly to a strong desire to die. I know what it feels like to want to kill yourself. I lost 20 lbs, and would get up only by being prodded by my dear husband. I had no appetite and basically became non-functional. I couldn’t think clearly, drive, or “be present” with others. I was like a zombie. Fortunately, my oncologist knew immediately that it was depression when I went to him about a week after my symptoms started. He sent me to a wonderful psychiatrist and she eventually got me on the “right medicine” and told me “I would get better.” This was a specific kind of depression and it had a definite beginning, middle and ending. I didn’t believe her but she was right. It took 9 months before I could say, “I think I’m me again.” It was a gradual ascent up from a deep dark well. I’m not sure if I would have made it if I didn’t have my strong faith (although I was very angry with God for a time), my ever-supportive cheerleader Norm, who always said, “You will be yourself again”, and my family and friends. I did go back to work in July, soon after radiation was complete. I was functional and much better, but still not totally my “chipper self.” 2003 was my “comeback year” I had beat this disease and depression. Wow, I was so alive. Life had new meaning. 2004 was also a magnificent year, except for needing a complete hysterectomy for “non-symptomatic large fibroroid tumors found on an exam by my new gynecologist. Yes, I fired the first one! It was determined that the fibroid tumors came as a result of taking tamoxofin. The whole ordeal was scary, but no cancer. That was a relief. 2005 was awesome until the end of the year. In November, my PET/CT showed that I had 2 small lesions in my right lung, which were too small to biopsy, and a larger one, which was biopsied as a “mesothelioma”, a cancer which is usually caused by asbestos. The surgeons in Charleston didn’t want to touch me, and along with my oncologist thought I should go to a mesothelioma specialist at Brigham and Women’s Hospital in Boston. The diagnosis of mesothelioma was confirmed by pathologists at B &W hospital. I had a right thoracotomy in February 2006, finding that the large tumor was not mesothelioma, and determining that the 2 smaller lesions were metastatic breast cancer. It was devastating. Norm and I wept in each other’s arms. When I went back for a surgical follow up in April, I also consulted with Dr. Harold Burstein, a breast cancer research oncologist at Dana Farber in Boston. His biggest message was “go for as much quality of life as possible when you approach treatment” After the surgery, I was classified as NED, (No evidence of disease i.e. no- tumors). He recommended Faslodex as the treatment of choice. It is an estrogen blocker, which was an IM injection every week. In June 2006 we moved home to Frederick. It was time for both of us. We had been away for 23 years with Norm’s work. Life was good. I was recovering from the thoracotomy (a very long and painful surgery), and remained in remission. By March 2007 I was ready to go back to work. FMH and the perioperative department (SDSS/PACU) was the perfect fit and it still is. I work 2 days a week and more when I’m up to it. In July 2007 my PET/CT showed tumors on both adrenal glands. My oncologist is Dr. Kanan Hudhud. He is compassionate, wise, caring, insightful, and intelligent. We always work together. We discussed surgery, but both adrenals would need to be removed. This surgery is not common, so we decided that oral chemo would be best to start. His recommendation was to start on oral chemo, Xeloda and to begin IV Herceptin. He gave me hope and encouragement. My downfall came the next day when I visited my primary physician for prescriptions and to keep her up to date on the new metastasis. She already knew. She was compassionate, but she became the “grim reaper.” Her words almost verbatim: “If this isn’t treated you have 6 months to live. Do you have an advance directive? I’ll get you paperwork to start that. Do you want to be DNR (Do Not Resuscitate). You don’t want to be on a ventilator do you”? I was numb. I just responded that I was preparing for my death but I didn’t want to be DNR yet. My thought was that she was sad about my news and couldn’t really deal with me emotionally. She did all the “correct” medical things related to dying. She actually is a very good physician. Yes, I fired her too. Don’t ever be afraid to fire a doctor if you have a bad experience. I left and just fell apart. I went straight to my Mom. Norm was out of town. I knew that my sister and her daughters were there. I told them I may have 6 months to live and we were going to live every day to the fullest. We all cried together. The next day I went to Dr Hudhud’s office for labs and he happened to be at the front window. I was the only pt in the waiting room. He asked me how I was and I told him my story. He was livid. He paced back and forth saying, “I can’t believe that GP’s do this”. They don’t know about Herceptin and Chemo. This conversation never happened. Forget what she said.” It took me a while to process everything and finally after a month or so, my positive attitude came back. I stared oral chemo in late summer with many side effects, which were diarrhea, hand and foot sores with infection. I continued this through November. It wasn’t affecting the tumors and the side effects were too much for me to bear. I started IV Taxol and almost died from an anaphylactic reaction. It was very scary, but Dr. Hudhud and his amazing staff saved my life. I started a different chemo and then we added another one in January. By April I was having bad side effects of edema throughout my body but especially my legs, neuropathy in my feet, and just feeling bad and beginning to get depressed. I prayed to God for help, telling him I didn’t think I could take it any more. A few weeks later my insurance denied my chemo due to the combination of use of the 2 chemos. Chemo was stopped, and although it seemed scary, I was actually relieved. I needed a break. The insurance situation was resolved after a few months. In the meantime, Dr. Hudhud sent me for a second opinion with a breast cancer oncologist, Dr. Tkaczuk, at the University of Maryland Medical Center. She felt strongly that I should stay off chemo because I was tolerating it so poorly. I was receiving Herceptin and she added Aromosin, an oral pill to work with the estrogen positive protein on my cancer cells. The adrenal tumors were still present and growing. On a visit with Dr. Tkaczuk in late July, Norm asked her if there was any way I could have surgery. She thought for a while and said, “Let me think about it and I will talk with a surgical oncologist with a specialty in adrenal tumors.” Two weeks later I received a call from Dr. Hanna’s office to call immediately for an appointment. Long story short, I had a bilateral adrenalectomy on August 11, 2007. He is an amazing surgeon. The surgery went very well. They were excited to offer me the surgery because I didn’t have mets in other places, or so we thought. The endocrinologist I saw at UMMC, (because I needed medication management for adrenal insufficiency) ordered an MRI of the brain to look at my pituitary gland. I didn’t get the results until several weeks after surgery when I was in Dr. Hudhud’s office for a follow up, telling him “by the way, I had an MRI of my brain”. We pulled the report up on his computer and sure enough, there were 3 small brain lesions. This was a true shock and seemed so cruel after knowing the adrenal tumors were gone. But after processing everything, I realized God’s hand was in it all. If my treatment hadn’t been denied by my insurance company, I wouldn’t have gone to UMMC at that time. It would not have led to having the adrenal tumors removed and then finding the brain tumors early. What a miracle. I started whole brain radiation the next week for 14 treatments. My last treatment was almost 7 weeks ago. It has been a tough road after radiation. I have never experienced such sheer exhaustion. I am getting weary, but I pull up my positive attitude and meet each new day. My recent MRI shows that the brain tumors are smaller, but not gone. I will go to UMMC to be evaluated for GAMMA Knife radiation on Thursday. The exciting news is that the tumor marker CEA, which is always indicative for the presence of a tumor in me, is at the lowest it has been since my initial lung recurrence. It should mean that there isn’t any “cancer in tumor form”. We just need to get the brain tumors under control. In closing, following the theme of this symposium “Wellness” – How do I keep myself in optimal health – mental and physical”, I would say the following: * A positive attitude is an important thing to me. We have to start each day with a smile, ready to meet the “challenges of the day”! Our positive attitude helps ourselves as well as others. * My faith in God is obviously huge for me. Find and follow your faith, your spirituality. It will give you guidance and peace. * Eat a balanced diet. Many take additional vitamins and supplements. I take vitamins. I eat fairly well, but I do love sweets. * Complementary / alternative therapies are very helpful to me. Massage and chiropractic are my “lifesavers”! * Exercise is good for the soul, as well as our bodies. Before cancer, I had a routine exercise program of 3 days each week. It felt wonderful. I resumed my exercises during my good years post cancer. It has been hard to get back into it with all that has occurred in the past 2 years. I walk as much as I can. I still hope to get back to more exercise when I can. * Having a loving, positive and supportive husband is my true blessing. Norm is a gem. I pray that you have this too. My family and friends are amazing in their love and support. My husband, mom, sisters, aunt, niece, and a few of my dear friends are here as support tonight. Would my family and friends please stand so I can acknowledge you? * The next thing I would suggest is to find a support group. The FCC support group, as well as the SOS program at FMH are amazing. * My work as an RN in the SDSS / PACU at FMH feeds my soul. It has been difficult in the past weeks after brain radiation, but I pull everything up that I have, with God’s help. It has gone well with the exception of sheer exhaustion. It is very frustrating. My supervisors and fellow staff in SDSS / PACU have been beyond amazing since I started working there. Last Christmas they gave me money for medical bills as well as time from their personal leave banks. This gift of time allowed me to take a leave of absence post surgery and during radiation. This wonderful staff has brought us meals both during my chemo and after my surgery. They give me support and love every day. Their attitude and support is beyond anything that I have ever experienced in a nursing staff in 27 years. * Practice forgiveness and don’t sweat the small stuff. Life is too short for all of us. We can’t waste it. Life has many challenges, both large and small. If we approach them with a positive attitude, dealing with the challenges is much easier. * My greatest goal is to “LIVE” every day to the fullest. I mean really live. I know there are several women in this room who are living with metastatic breast cancer every day. Their stories are filled with courage and hope as well as disappointments, fear and uncertainty. A few of these women are my “chemo buddies.” They give me hope and courage every day. They are amazing women who meet every day with a positive attitude and “ride the wave” of cancer. It is truly a roller coaster. This is true for all with breast cancer. I would now like all survivors of metastatic breast cancer to stand for a round of applause. Now all survivors of breast cancer please stand and join them. Thanks to Jane Garvin and the other organizers of this symposium for being sensitive to survivors with metastic breast cancer. Organizations becoming more sensitive and aware of women and men with metastic breast CA, will aid in more funds and research for BC mets. In closing, let me leave you with these words: A full life is about relationships, not experiences. Thank you. |
| home | ║ | who we are | ║ | awareness | ║ | research | ║ | support | ║ | fundraising | ║ | store | Metavivor Research & Support Program. Copyright 2009 © All Rights Reserved. |