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Estrella's Eve Cunningham
Estrella Community rallies for Cancer Crusader Eve Cunningham
Written by Jen Barber Eve’s day started like any other. Two years ago, the working mom of two teenage boys squeezed in time for a routine adjustment with her chiropractor. Far from routine, though, was leaving with a broken sternum. “I had never broken a bone in my life and here, the strongest bone in my body, was easily broken.” Little did Eve know, her routine appointment would be the beginning of a life-changing journey strengthening her faith and engaging the power of love from her friends and family.
Eve Cunningham has touched many Estrella lives through educating our little ones whether during her time at Estrella Mountain Preschool or at The Illiad Academy of the Odyssey Academy down the hill. |
At just 43 years of age, Eve was diagnosed with a rare blood cancer affecting her bones called Multiple Myeloma IGA. “My shoulder and arm bones were filled with tiny little holes they called a “moth eaten” appearance and it was cancer.” How and why Eve fell victim to this cancer remains a mystery.
She turned to Cancer Treatment Centers of America for help. She journals, “I remember lying in my hospital bed exhausted thinking I just can’t do this anymore and I would begin singing in my head the song, ‘Jesus Take the Wheel.’”
Chemo. Radiation. Countless surgeries. Eve opted for a stem cell transplant knowing the odds of infection, time off from work, and financial stability were all at stake. “The community support I received was absolutely amazing! It brings tears to my eyes. I felt so loved and cared for!”
Hundreds turned out for a fundraiser at our local yogurt shop for Eve. A child at her school made and sold rubber band bracelets raising $100. Another friend held a wine tasting event and silent auction filling a restaurant to standing room only.
Her parents and closest friends tended to her and her daily needs around her home. One friend arranged a meal schedule. Others stayed with her around the clock… even when the pain and anxiety were too much to bear in the middle of the night.
“I feel so blessed because I lived and I got to see and feel and hear directly how much I really was loved by the way my family and friends and the community rallied around me,” Eve thinks back on her fight to survive.
This doesn’t just happen to anyone.
Eve is a gentle and caring soul.
On a warm Saturday morning this summer, now cancer free, Eve dropped by Oasis Bagels to pick up breakfast. It must have taken her more than 15 minutes to reach the register - saying “hi” to each person stopping her to find out how she was doing. She’s loved by many and we’ve been rooting for her though Facebook updates, words of mouth, and silent thoughts and prayer. She credits her “village” of family, friends, supportive employers, and Cancer Treatment Centers of America for her survival.
“It is too early to know why my life’s path had to take this turn. However, I know at some point it will be made clear to me. In the meantime, I just plan on continuing to love life and the wonderful people in it who make life worth living!”
She turned to Cancer Treatment Centers of America for help. She journals, “I remember lying in my hospital bed exhausted thinking I just can’t do this anymore and I would begin singing in my head the song, ‘Jesus Take the Wheel.’”
Chemo. Radiation. Countless surgeries. Eve opted for a stem cell transplant knowing the odds of infection, time off from work, and financial stability were all at stake. “The community support I received was absolutely amazing! It brings tears to my eyes. I felt so loved and cared for!”
Hundreds turned out for a fundraiser at our local yogurt shop for Eve. A child at her school made and sold rubber band bracelets raising $100. Another friend held a wine tasting event and silent auction filling a restaurant to standing room only.
Her parents and closest friends tended to her and her daily needs around her home. One friend arranged a meal schedule. Others stayed with her around the clock… even when the pain and anxiety were too much to bear in the middle of the night.
“I feel so blessed because I lived and I got to see and feel and hear directly how much I really was loved by the way my family and friends and the community rallied around me,” Eve thinks back on her fight to survive.
This doesn’t just happen to anyone.
Eve is a gentle and caring soul.
On a warm Saturday morning this summer, now cancer free, Eve dropped by Oasis Bagels to pick up breakfast. It must have taken her more than 15 minutes to reach the register - saying “hi” to each person stopping her to find out how she was doing. She’s loved by many and we’ve been rooting for her though Facebook updates, words of mouth, and silent thoughts and prayer. She credits her “village” of family, friends, supportive employers, and Cancer Treatment Centers of America for her survival.
“It is too early to know why my life’s path had to take this turn. However, I know at some point it will be made clear to me. In the meantime, I just plan on continuing to love life and the wonderful people in it who make life worth living!”
Eve with her two sons at the Estrella Cancer Crusader walk in October 2014
Eve's Q&A with estrella cancer crusaders
Eve with the Goodyear Ballpark's Zizzy at the Estrella Cancer Crusaders walk in October 2014
Eve is an Estrella resident, the director of the Iliad Academy of the Odyssey Academy, and a survivor of Multiple Myeloma IGA - blood cancer that develops in the bone marrow. Eve has two amazing boys; Jake is 15 and Sam is 13 years old.
We thank this Estrella Cancer Crusader for sharing her story with us. Our volunteer and cancer survivor, Jen Barber, interviews Eve about her journey and road to recovery.
Q. What is your age and career history?
A. I am 45. I was 43 when I was diagnosed. I spent my 44th birthday in the Cancer Treatment Center inpatient care. One of the kind nurses there brought me a fancy chocolate cupcake in on her day off. We had developed an instant bond and happened to share the same birthday.
I have been in early childhood education for 20 years. I am currently the director of The Iliad Academy Preschool in Buckeye which is owned and operated by the founders of The Odyssey Academy. Prior to that I taught preschool at Estrella Mountain Preschool for 4 years and did substitute teaching in the Liberty school district at Westar, Estrella, Liberty and Freedom. Prior to that I was the Assistant Director at ASU West’s Early Childhood Lab School and prior to that I taught at Tesseract Preschool in Paradise Valley and with Head Start.
Q. Can you please tell us what events led up to your diagnosis?
A. A year before I was diagnosed, a chiropractor broke my sternum in an everyday adjustment that he had done many times before. It was strange as I had never broken a bone in my life and here the strongest bone in my body was broken so easily. Both the chiropractor and my doctor were perplexed but no one suspected cancer. Fast forward about six months. I began having a lot of back pain, so much that I was limping. I was going to a different chiropractor 3 times a week and would get slight and temporary improvement but that was it. This was on going for about 5 months. Then in April, the back pain began to get worse and the pain also began radiating down my leg until it became so excruciating that pain relievers and nerve blockers wouldn’t even help. I could not get comfortable or alleviate the pain no matter what position I was in. In May, I was closing the hatch on my car when I had this horrible pain in my arm. I thought I just strained it but as the days went on the pain got worse until I was unable to use my arm. Monday of the same week, I went to the neurologist about my back and he determined that something was pushing on a nerve causing the pain, probably a slipped disk or something and he requested an MRI. On Wednesday, I went to the doctor about my arm and she said she would send me to an orthopedic but wanted to get an xray first. So I went for an xray that afternoon. She called me the next morning, May 23rd and told me that she had gotten my xray back and that my shoulder and arm bones were filled with tiny little holes that they called a “moth eaten” appearance and that it was cancer. She said she thought it must have masticized from another cancer like breast or lung but wouldn’t know without further testing. She said she wanted an MRI that afternoon. I asked her if she could also order an MRI of my back, too, since that is what the neurologist wanted. She agreed. I went that afternoon. When the results came back from the MRI, they showed that I had three tumors in my left arm between my shoulder and my elbow which had been causing the arm pain and two large tumors in my sacral area which had been causing the pain in my back and down my leg. From there, I was sent to an oncologist. He sent me for a tumor biopsy and a bone scan which led to my diagnosis. The bone scan also revealed more tumors in between my shoulder blades, on my left hip, and on my left thigh bone.
Q. What was the diagnosis?
A. June 5, 2013: Multiple Myeloma IGA. There is no cure. Typically it affects black men in their sixties and farmers. Why or how I ended up having it remains a mystery. It is however beginning to become more common among younger people. This is the disease that Tom Brokaw acquired as well.
Q. How did the illness affect your life - professionally and personally?
A. My life came to a screeching halt! From the time that I received the phone call from my doctor telling me I had cancer, it all became a whirlwind. Between the severe pain I was in, the numerous tests, the fuzziness in my mind from the pain killers and the emotional shock, I felt like I was living a nightmare that I could not wake up from! I was just a puppet going through the motions of each step that they told me to do. The day the oncologist told me my diagnosis, he also told me that had it not been found, I would have been “gone” within two months. Six days later, on June 11th, I was admitted into CTCA in patient for pain control. My arm had broken in my sleep and I was in debilitating pain. I remained inpatient for a month, came home for several days, and then was readmitted on July 18th due to severe edema from all of the steroids they were giving me for pain.
During my stay at CTCA, I could look out my window and see the Estrella Mountains. My “normal life” began to seem like a dream and I wondered if I was ever going to get to go home again. I could also look out another window from the center and see the cars driving by on the freeway. It was horrible! I felt like the world was going on around me and I was trapped in horror of one health issue after another. I remember my nurses coming in to care for me and how they looked and smelled so clean and here I was too weak and in too much pain to even take a shower since I had been admitted. I would literally just watch as life everywhere went on without me. I would hear the nurses laughing, speaking about something they had done with their friends or family as I just lay there, day after day, trapped in a body filled with pain.vThe life that I had always known was nowhere to be seen and felt unattainable in the future! Anxiety and depression set in. During my stay, I had four surgeries in less than four weeks. They had to put a titanium rod in my arm during which time my arm broke in another place during the surgery. The bone in my elbow was so disintegrated that they had to do another surgery to put in a titanium plate so that the rod had something to attach to. In addition, my spine had multiple fractures so they had to kyphoplasty to add cement to my spine to keep it from breaking completely. And to make matters worse, all of the pain meds had made my bowels and my stomach stop working properly so I had to have surgery to clear everything out. Once the surgeries were done, they began radiating the tumors in my sacrum to help relieve the pain. I had 9 out of 10 treatments while I was still in patient. When I would have to go for radiation I would get anxiety attacks and nausea, so badly that they just let me stay in bed and wheeled me to the radiation in my bed. Although I still had to go through the excruciating process of getting on and off the narrow table for the radiation.
Somehow in the blink of an eye, I had gone from being a strong, healthy, independent woman to someone who now needed 24 hour care. I needed help to get in and out of bed, stand up, sit down, walk, and even assistance in the bathroom. It all was so humbling! I was no longer living my life but surviving literally from one minute to the next.
It sounds like a cliché but it is so true, without health you have nothing! I was unable to care for my children, unable to work, cook, shower, or drive. I could barely even walk!v I had gone from hiking, biking and running to using a walker.
Although I did have to take time off from work, the timing of my illness was helpful because as a director, with a typical school schedule, I was the sickest during the summer and my staff jumped in and ran summer camp, did registrations, and prepared for the upcoming school year. I was back to work on the first day of school which was August 19th. My days were abbreviated as I was still pretty weak and did not have a lot of stamina but being back at work was the best thing for me. Doing what I loved made me happy and made me feel alive again, the beginning of a sense of normalcy that I had feared would never return! I started back working on Monday and Tuesday mornings and then would have chemo on Wednesdays. I would come back on Thursday morning and then the sickness from the weekly chemo treatments would kick in on Friday and I would be sick for the long weekend and back to work on Monday morning. This was my schedule until my chemo ended - the end of October. vAfter that, I began working all four days in the morning and then headed to the cancer center in the afternoon for my appointments. Although I was still unable to drive, I had a friend who lived in Estrella who would drive me to work and then the cancer center would pick me up at work, drive me to my appointments, and then back home. My time commitment of my appointments at the cancer center became like a second job. On December 9th, I had my stem cell transplant. Once again, it coincidined nicely with my schedule at work. Not purposeful, that just happened to be where I was in my treatment plan. I was off work for my recovery until the last week in Jaunary, but two of those weeks my school was closed for winter break. Once returning to work, my schedule still included leaving early several days of week for my appointments through the end of the school year. I want to acknowledge my amazing bosses who supported me throughout this entire process! Even though I had to miss so much work, they made sure that I was taken care of so that my survival financially was not an additional worry that would be added to my plate. They were also part of my support who would come out and care for me once I was out of the hospital. The kindness, generousity and sincere care for me is something you just don’t typically see with employers. They truly cared about me and supported me any way they could to help me return to health!
I continue to have appointments two, sometimes three times a week, but now this school year, because I have less appointments, I will be able to do most appointments after work and on Fridays when my school is closed minimizing missed time from work.
Q. I do remember attending a frozen yogurt night in Estrella. FroGos was packed! Can you tell us about the community support you've received?
A. The community support I received was absolutely amazing! I am still in awe whenever I think of it! It also brings tears to my eyes. I felt so loved and cared for! And even after everything that I have gone through I feel thankful and blessed! I feel that I was blessed in a way that most people never get to see. I liken it to when someone dies and everyone gathers for their funeral and talks about how much they cared for and loved that person! That person is no longer alive to hear how much they were loved! I feel so blessed because I lived and I got to see and feel and hear directly how much I really was loved by the way my family and friends and the community rallied around me!
When I was released from the hospital, I needed 24 hour care for a month. I was alone but did not qualify for 24 hour in home care through my insurance. My dad had been by my side for 3 weeks of my hospital stay and had to go back to work. Once he had to leave, I had a friend who came and sat with me every day for my remaining time in the hospital and friends who would come stay with me at night in the hospital as my anxiety set in. During my month stay in the hospital, my mom was in Montana caring for my boys. After that month, my boys came home but my mom was working through health issues of her own and unable to come care for me. It was then that my amazing friends kicked into gear! I had one friend who set up a calendar for my friends to take shifts to stay with me 24 hours a day and another who set up a schedule for people to bring me daily meals. Friends also cared for my boys while their dad was at work, did my shopping, cleaned my house, did my laundry, took care of my yard, drove me, and anything else that I needed. Just taking care of my never ending needs was not easy! I truly needed help around the clock. Night time was the worst as I could not sleep for more than a few minutes at a time because of the pain, muscle spasms, and hot flashes! So those who took my night shift were not sleeping either! It truly was work to take care of me! My aunt who, even though I had never really had the opportunity to get to know her as a child, jumped on a plane from Texas and came and cared for me for a week!
Another friend of mine started a blog to keep everyone updated on my progress to free my parents from needing to do so. I had hundreds of encouraging and loving comments in response to her posts.
I also have three friends here in Estrella who are nurses. They would come and give me neupogen shots. Two of them are actually nurses at CTCA and several times came to “my rescue” while I was inpatient and different urgencies would occur!
Several of my friends planned fundraisers for me! My teachers at work very quickly put together a two day rummage sale from donations from my families at the school, friends, and community members that brought in astonishing profits. They also made ribbons, popcorn, and cake pops to sell to the families at my school to help raise funds. A sibling of one of the children enrolled in my school, made rainbow loom bracelets and sold them at her school and raised over a $100! Another friend set up a fundraiser here in Estrella at FroGo which had an amazing turn out, it was packed all night long! Another offered her restaurant and organized a wine tasting and silent auction event which filled her restaurant to standing room only. And other friends organized a golf tournament and silent auction with an excellent turn out as well! In addition friends sent me monetary donations through my blog. It truly was unbelievable!
Q. Can you tell us about your treatments?
A. In addition to the surgeries I had while I was in the hospital, I had three months of weekly chemo, 10 rounds of radiation to the tumors in my back and 15 rounds of radiation to the tumors in my arm, one round to the tumor between my shoulder blades and a stem cell transplant. I also did two rounds of oral maintenance chemo and then opted to stop when my oncologist agreed to test me on a monthly basis. This was a HUGE decision to make. There are two views on maintenance therapy for multiple myeloma. My oncologist and transplant doctor recommend it so I started it but I felt horribly fatigued and lived with fear of the side effects that were possible from it which were secondary cancers and neuropathy. Then I discovered that Mayo clinic does not recommend it and I felt like I had a choice! It was a scary decision to make, to go against the recommendation of the people who just saved my life, but as soon as I made the decision, a huge weight was lifted off my shoulders. Rather than doing the maintenance out of fear of the cancer coming back, I made a conscience decision based on my quality of life and my personal intuition as to what is right for me.
The stem cell transplant was another journey in and of itself. I struggled terribly with the decision to have the transplant. I was filled with fear for the process, the recovery and the many life threatening possibilities that could happen when you have a nonexistent immune system! Being blasted with chemo to purposely destroy my bone marrow and immune system was simply frightening. However, it was the best method to clear the cancer from my system and give me the best opportunity to regain my health! My parents both came and stayed with me for a month and kept my house as sterile as possible and nursed me through it without any complications at all!! As far as transplants go, that is a feat! Only once did I get a fever and had to go to the hospital in the middle of the night. They gave me heavy duty IV antibiotics, ran tests and determined that I was ok and sent me home. I had kept my hair through the three months of weekly chemo but with the transplant there was no way! I had the transplant on December 9th and on Christmas day, I cut off the remainder and had the transplant center shave my head the following appointment. This was devastating for me! I had always had long hair, it was as much a part of me as my arm! I felt like I had lost a body part and my identity. It really is amazing how much of our identity is wrapped up in our hair. My hair is growing in thick and curly! The complete opposite than my usual hair. I don’t know what to do with these curls, they have a mind of their own! They say in 6 months to a year the curls should calm down and I am hoping to be left with thick hair with body. Something to look forward to!
I also had months of occupational therapy for my arm and physical therapy for my back and to regain strength in my lower body. I am still continuing to receive acupuncture, chiropractic, and massage to help manage my remaining pain. In addition, I also receive counseling to help work through all of the emotional trauma.
Q. Cancer Treatment Centers of America is one of our supporters for our walk on October 18, 2014. Any comments about your experience with CTCA?
A. CTCA is the most amazing place!! What you see on their commercials cannot even begin to encapsulate the magnitude of their quality. I had heard one person refer to it as Disneyland for cancer patients! Fighting cancer has got to be one of the most horrific things people have to suffer through, yet CTCA supports its patients in such a way, that you are able to look beyond the suffering at the amazing people who are surrounding you to help! Every department, every stakeholder, every doctor, nurse, tech makes you feel that you, your life, and your fight matters to them. They give you smiles, hugs, shoulders to cry on. They cry with you, they celebrate with you! They provide care for your total being. Beyond just the traditional chemo and radiation, they provide acupuncture, massage, chiropractic, occupational therapy, physical therapy, counseling, personal dieticians, and naturopaths all at ONE location! They have a chapel you can visit that has the most amazing stain glass window! They hold church service and have chaplains that come to you both inpatient and outpatient, they have volunteers who will sit with you and assist you with any help you may need. They even have a variety of therapy dogs who come to visit on a regular basis! Everyone treats you with respect and dignity. They also have an amazing cafeteria with healthy, organic, delicious food prepared by chefs. They have a juice and coffee bar where they make drinks to order. They give discounts on food and drinks to their patients and their caregivers. They have a salon with very caring and knowledgeable staff who help you choose a wig and help cut and style your hair as it is growing back in. They also provide manicures and pedicures. Once again they provide discounts to patients and their caregivers. I could go on and on about all of the amazing people who work here and make it the incredible place that it is. When I walk through the doors of the CTCA I feel an instant comfort. No matter who I interface with that day, I know that they are there to support me. The amount of gratitude I feel for the CTCA is truly indescribable! I think to truly be able to understand its magnitude, you would have to experience it yourself! There really is no other place like it. Another service that they provide is transportation to and from the center and to off site appointments! My transplant facility was all the way at 90th Street and Shea. They would pick me up at home and drive me there every other day throughout my transplant process. This is an amazing service. Between the meds you have to take and your weak and sickly times, it would not have been possible for me to drive myself. When you are battling cancer, you have nonstop, daily appointments, trying to find someone who could drive you to all of your appointments would be extremely challenging! In addition, they drive your family members and caregivers to and from the airport! The drivers were also very professional and caring!
I get teary anytime I think of those nurses and techs that cared for me while I was inpatient! They were so amazingly gentle, respectful, patient, and helpful. I was truly hard work! It would take two of them to help me just sit up in bed because of the excruciating pain in my arm and back. Yet, they always took the time to gently ease me up, help me stand up, help me in the bathroom. They kept me clean and yet respected my dignity! The night nurses would come in and talk with me when I was having anxiety. I got to know each of the regular nurses that cared for me. I asked about their lives and their families outside of work and I felt like we became friends. I feel they all went above and beyond to care for me! When they see me healthy now, they are always in awe after how sick I was while they were caring for me. So many of them call me their miracle patient!
Q. How are you today?
A. I am cancer free! I still continue to have daily pain in my back, arm, and joints. I still have a long way to go for strengthening but I have also come a long way! I can no longer run, bike, or snow ski which makes me sad as they were three things that I really loved to do. I do not have a full range of motion in my arm with the rod, but I am very thankful for what I do have! My hair is growing back! My life still consists of regular doctor appointments and probably always will. It has become “my new normal.” However, because I have relationships with all of my team at CTCA, I do not look at it as a negative thing. I look forward to seeing them during my visits! I am alive and so very thankful! I am FINALLY beginning to feel like myself again!
Q. How has fitness helped your fight and recovery?
A. When my battle began, I was in the best physical condition that I had been since becoming a mother. I was hiking, biking and running regularly and I was strong! I honestly think that the fact that I was healthy and strong truly saved my life! As soon as I was able, I was back to excercising. I began with walking, then hiking, and now I also go to the gym. It was frustrating and sad for me at first as I could not return to my favorite exercise routine which included running and biking but I have made some adjustments and have accepted that a new routine is ok too! I have a very close friend who has been by my side excercising daily with me since I have been able! I feel that resuming my exercise has also helped in my recovery.
Q. What are your words of advice for fighters and caregivers?
A. I would say my advice for fighters would be to always look for the blessing. Even during the worst times, there are blessings too. Look around you and be consciously thankful and express your gratitude to God and those that help you! I know how hard it is to stay positive when you are fighting for your life, but I truly believe that positive thinking and keeping your sense of humor is your best weapon. Rely on your faith. I truly believe that everything does happen for a reason! Even the worst of situations, have purpose not only for you but for those whose lives you touch during the process! Lean on God when you feel like you cannot push forth another minute. I remember lying in my hospital bed exhausted, thinking I just can’t do this anymore and I would begin singing in my head the song, “Jesus take the wheel." I just kept singing that verse over and over again to try and calm myself. I also remember having conversations with God in the middle of the night. I was truly talking out loud to him asking him for strength and thanking him for all of the blessings that I was surrounded with even in the midst of the horror! I would not consider myself a really “religious” person but I do have faith and this battle enhanced my faith tenfold!!
Being a caregiver is not easy!! But please know that you make the difference! Fighting cancer is a lonely battle even when you are surrounded by people who are caring for you because the patients are the ones who actually have to endure both the physical and the emotional horror, no one else can do it for them. Being there to listen to their fears, sadness, anger and pain in addition to meeting their physical needs truly helps them stay strong and keep fighting!
Caregivers also need support! It is both physically and emotionally exhausting to care for a cancer patient! Being by the patient’s side as they are subjected to procedure after procedure, grueling side effects, pain, nausea, etc etc and not be able to protect them but just be there for whatever they need takes its toll on the caregivers!
Q. Anything else you'd like to add is welcome!
A. Fighting cancer is not an individual battle it truly takes a village and without my “village” of family, friends, community and CTCA, I would not be here today!
It is too early to know why my life’s path had to take this turn. However, I know at some point it will be made clear to me. In the mean time, I just plan on continuing to love life and the wonderful people in it who make life worth living! I will continue to focus on all of the blessings that still shone through even throughout all of the fury! I have gained a new empathy that I did not have before to reach out and help others who are fighting a battle. I plan on volunteering at the Make-A-Wish foundation to be a wish granter! This person works with the children and their families to select a wish and then work with the agency to make it happen! I am very excited about this! I feel it is the perfect match for me to combine my passion and experience for children and their families with my empathy for battling a life threatening illness. I want to be an inspiration for others!
I have always known that my purpose on this earth was to love and care about children and people in general. But now I feel that because of what I have gone through, I have even more to give and I look forward to doing just that!!
Eve was kind to do a Q & A with Estrella Cancer Crusaders. To read more, please visit this website, and go to "Faces of Estrella."
We thank this Estrella Cancer Crusader for sharing her story with us. Our volunteer and cancer survivor, Jen Barber, interviews Eve about her journey and road to recovery.
Q. What is your age and career history?
A. I am 45. I was 43 when I was diagnosed. I spent my 44th birthday in the Cancer Treatment Center inpatient care. One of the kind nurses there brought me a fancy chocolate cupcake in on her day off. We had developed an instant bond and happened to share the same birthday.
I have been in early childhood education for 20 years. I am currently the director of The Iliad Academy Preschool in Buckeye which is owned and operated by the founders of The Odyssey Academy. Prior to that I taught preschool at Estrella Mountain Preschool for 4 years and did substitute teaching in the Liberty school district at Westar, Estrella, Liberty and Freedom. Prior to that I was the Assistant Director at ASU West’s Early Childhood Lab School and prior to that I taught at Tesseract Preschool in Paradise Valley and with Head Start.
Q. Can you please tell us what events led up to your diagnosis?
A. A year before I was diagnosed, a chiropractor broke my sternum in an everyday adjustment that he had done many times before. It was strange as I had never broken a bone in my life and here the strongest bone in my body was broken so easily. Both the chiropractor and my doctor were perplexed but no one suspected cancer. Fast forward about six months. I began having a lot of back pain, so much that I was limping. I was going to a different chiropractor 3 times a week and would get slight and temporary improvement but that was it. This was on going for about 5 months. Then in April, the back pain began to get worse and the pain also began radiating down my leg until it became so excruciating that pain relievers and nerve blockers wouldn’t even help. I could not get comfortable or alleviate the pain no matter what position I was in. In May, I was closing the hatch on my car when I had this horrible pain in my arm. I thought I just strained it but as the days went on the pain got worse until I was unable to use my arm. Monday of the same week, I went to the neurologist about my back and he determined that something was pushing on a nerve causing the pain, probably a slipped disk or something and he requested an MRI. On Wednesday, I went to the doctor about my arm and she said she would send me to an orthopedic but wanted to get an xray first. So I went for an xray that afternoon. She called me the next morning, May 23rd and told me that she had gotten my xray back and that my shoulder and arm bones were filled with tiny little holes that they called a “moth eaten” appearance and that it was cancer. She said she thought it must have masticized from another cancer like breast or lung but wouldn’t know without further testing. She said she wanted an MRI that afternoon. I asked her if she could also order an MRI of my back, too, since that is what the neurologist wanted. She agreed. I went that afternoon. When the results came back from the MRI, they showed that I had three tumors in my left arm between my shoulder and my elbow which had been causing the arm pain and two large tumors in my sacral area which had been causing the pain in my back and down my leg. From there, I was sent to an oncologist. He sent me for a tumor biopsy and a bone scan which led to my diagnosis. The bone scan also revealed more tumors in between my shoulder blades, on my left hip, and on my left thigh bone.
Q. What was the diagnosis?
A. June 5, 2013: Multiple Myeloma IGA. There is no cure. Typically it affects black men in their sixties and farmers. Why or how I ended up having it remains a mystery. It is however beginning to become more common among younger people. This is the disease that Tom Brokaw acquired as well.
Q. How did the illness affect your life - professionally and personally?
A. My life came to a screeching halt! From the time that I received the phone call from my doctor telling me I had cancer, it all became a whirlwind. Between the severe pain I was in, the numerous tests, the fuzziness in my mind from the pain killers and the emotional shock, I felt like I was living a nightmare that I could not wake up from! I was just a puppet going through the motions of each step that they told me to do. The day the oncologist told me my diagnosis, he also told me that had it not been found, I would have been “gone” within two months. Six days later, on June 11th, I was admitted into CTCA in patient for pain control. My arm had broken in my sleep and I was in debilitating pain. I remained inpatient for a month, came home for several days, and then was readmitted on July 18th due to severe edema from all of the steroids they were giving me for pain.
During my stay at CTCA, I could look out my window and see the Estrella Mountains. My “normal life” began to seem like a dream and I wondered if I was ever going to get to go home again. I could also look out another window from the center and see the cars driving by on the freeway. It was horrible! I felt like the world was going on around me and I was trapped in horror of one health issue after another. I remember my nurses coming in to care for me and how they looked and smelled so clean and here I was too weak and in too much pain to even take a shower since I had been admitted. I would literally just watch as life everywhere went on without me. I would hear the nurses laughing, speaking about something they had done with their friends or family as I just lay there, day after day, trapped in a body filled with pain.vThe life that I had always known was nowhere to be seen and felt unattainable in the future! Anxiety and depression set in. During my stay, I had four surgeries in less than four weeks. They had to put a titanium rod in my arm during which time my arm broke in another place during the surgery. The bone in my elbow was so disintegrated that they had to do another surgery to put in a titanium plate so that the rod had something to attach to. In addition, my spine had multiple fractures so they had to kyphoplasty to add cement to my spine to keep it from breaking completely. And to make matters worse, all of the pain meds had made my bowels and my stomach stop working properly so I had to have surgery to clear everything out. Once the surgeries were done, they began radiating the tumors in my sacrum to help relieve the pain. I had 9 out of 10 treatments while I was still in patient. When I would have to go for radiation I would get anxiety attacks and nausea, so badly that they just let me stay in bed and wheeled me to the radiation in my bed. Although I still had to go through the excruciating process of getting on and off the narrow table for the radiation.
Somehow in the blink of an eye, I had gone from being a strong, healthy, independent woman to someone who now needed 24 hour care. I needed help to get in and out of bed, stand up, sit down, walk, and even assistance in the bathroom. It all was so humbling! I was no longer living my life but surviving literally from one minute to the next.
It sounds like a cliché but it is so true, without health you have nothing! I was unable to care for my children, unable to work, cook, shower, or drive. I could barely even walk!v I had gone from hiking, biking and running to using a walker.
Although I did have to take time off from work, the timing of my illness was helpful because as a director, with a typical school schedule, I was the sickest during the summer and my staff jumped in and ran summer camp, did registrations, and prepared for the upcoming school year. I was back to work on the first day of school which was August 19th. My days were abbreviated as I was still pretty weak and did not have a lot of stamina but being back at work was the best thing for me. Doing what I loved made me happy and made me feel alive again, the beginning of a sense of normalcy that I had feared would never return! I started back working on Monday and Tuesday mornings and then would have chemo on Wednesdays. I would come back on Thursday morning and then the sickness from the weekly chemo treatments would kick in on Friday and I would be sick for the long weekend and back to work on Monday morning. This was my schedule until my chemo ended - the end of October. vAfter that, I began working all four days in the morning and then headed to the cancer center in the afternoon for my appointments. Although I was still unable to drive, I had a friend who lived in Estrella who would drive me to work and then the cancer center would pick me up at work, drive me to my appointments, and then back home. My time commitment of my appointments at the cancer center became like a second job. On December 9th, I had my stem cell transplant. Once again, it coincidined nicely with my schedule at work. Not purposeful, that just happened to be where I was in my treatment plan. I was off work for my recovery until the last week in Jaunary, but two of those weeks my school was closed for winter break. Once returning to work, my schedule still included leaving early several days of week for my appointments through the end of the school year. I want to acknowledge my amazing bosses who supported me throughout this entire process! Even though I had to miss so much work, they made sure that I was taken care of so that my survival financially was not an additional worry that would be added to my plate. They were also part of my support who would come out and care for me once I was out of the hospital. The kindness, generousity and sincere care for me is something you just don’t typically see with employers. They truly cared about me and supported me any way they could to help me return to health!
I continue to have appointments two, sometimes three times a week, but now this school year, because I have less appointments, I will be able to do most appointments after work and on Fridays when my school is closed minimizing missed time from work.
Q. I do remember attending a frozen yogurt night in Estrella. FroGos was packed! Can you tell us about the community support you've received?
A. The community support I received was absolutely amazing! I am still in awe whenever I think of it! It also brings tears to my eyes. I felt so loved and cared for! And even after everything that I have gone through I feel thankful and blessed! I feel that I was blessed in a way that most people never get to see. I liken it to when someone dies and everyone gathers for their funeral and talks about how much they cared for and loved that person! That person is no longer alive to hear how much they were loved! I feel so blessed because I lived and I got to see and feel and hear directly how much I really was loved by the way my family and friends and the community rallied around me!
When I was released from the hospital, I needed 24 hour care for a month. I was alone but did not qualify for 24 hour in home care through my insurance. My dad had been by my side for 3 weeks of my hospital stay and had to go back to work. Once he had to leave, I had a friend who came and sat with me every day for my remaining time in the hospital and friends who would come stay with me at night in the hospital as my anxiety set in. During my month stay in the hospital, my mom was in Montana caring for my boys. After that month, my boys came home but my mom was working through health issues of her own and unable to come care for me. It was then that my amazing friends kicked into gear! I had one friend who set up a calendar for my friends to take shifts to stay with me 24 hours a day and another who set up a schedule for people to bring me daily meals. Friends also cared for my boys while their dad was at work, did my shopping, cleaned my house, did my laundry, took care of my yard, drove me, and anything else that I needed. Just taking care of my never ending needs was not easy! I truly needed help around the clock. Night time was the worst as I could not sleep for more than a few minutes at a time because of the pain, muscle spasms, and hot flashes! So those who took my night shift were not sleeping either! It truly was work to take care of me! My aunt who, even though I had never really had the opportunity to get to know her as a child, jumped on a plane from Texas and came and cared for me for a week!
Another friend of mine started a blog to keep everyone updated on my progress to free my parents from needing to do so. I had hundreds of encouraging and loving comments in response to her posts.
I also have three friends here in Estrella who are nurses. They would come and give me neupogen shots. Two of them are actually nurses at CTCA and several times came to “my rescue” while I was inpatient and different urgencies would occur!
Several of my friends planned fundraisers for me! My teachers at work very quickly put together a two day rummage sale from donations from my families at the school, friends, and community members that brought in astonishing profits. They also made ribbons, popcorn, and cake pops to sell to the families at my school to help raise funds. A sibling of one of the children enrolled in my school, made rainbow loom bracelets and sold them at her school and raised over a $100! Another friend set up a fundraiser here in Estrella at FroGo which had an amazing turn out, it was packed all night long! Another offered her restaurant and organized a wine tasting and silent auction event which filled her restaurant to standing room only. And other friends organized a golf tournament and silent auction with an excellent turn out as well! In addition friends sent me monetary donations through my blog. It truly was unbelievable!
Q. Can you tell us about your treatments?
A. In addition to the surgeries I had while I was in the hospital, I had three months of weekly chemo, 10 rounds of radiation to the tumors in my back and 15 rounds of radiation to the tumors in my arm, one round to the tumor between my shoulder blades and a stem cell transplant. I also did two rounds of oral maintenance chemo and then opted to stop when my oncologist agreed to test me on a monthly basis. This was a HUGE decision to make. There are two views on maintenance therapy for multiple myeloma. My oncologist and transplant doctor recommend it so I started it but I felt horribly fatigued and lived with fear of the side effects that were possible from it which were secondary cancers and neuropathy. Then I discovered that Mayo clinic does not recommend it and I felt like I had a choice! It was a scary decision to make, to go against the recommendation of the people who just saved my life, but as soon as I made the decision, a huge weight was lifted off my shoulders. Rather than doing the maintenance out of fear of the cancer coming back, I made a conscience decision based on my quality of life and my personal intuition as to what is right for me.
The stem cell transplant was another journey in and of itself. I struggled terribly with the decision to have the transplant. I was filled with fear for the process, the recovery and the many life threatening possibilities that could happen when you have a nonexistent immune system! Being blasted with chemo to purposely destroy my bone marrow and immune system was simply frightening. However, it was the best method to clear the cancer from my system and give me the best opportunity to regain my health! My parents both came and stayed with me for a month and kept my house as sterile as possible and nursed me through it without any complications at all!! As far as transplants go, that is a feat! Only once did I get a fever and had to go to the hospital in the middle of the night. They gave me heavy duty IV antibiotics, ran tests and determined that I was ok and sent me home. I had kept my hair through the three months of weekly chemo but with the transplant there was no way! I had the transplant on December 9th and on Christmas day, I cut off the remainder and had the transplant center shave my head the following appointment. This was devastating for me! I had always had long hair, it was as much a part of me as my arm! I felt like I had lost a body part and my identity. It really is amazing how much of our identity is wrapped up in our hair. My hair is growing in thick and curly! The complete opposite than my usual hair. I don’t know what to do with these curls, they have a mind of their own! They say in 6 months to a year the curls should calm down and I am hoping to be left with thick hair with body. Something to look forward to!
I also had months of occupational therapy for my arm and physical therapy for my back and to regain strength in my lower body. I am still continuing to receive acupuncture, chiropractic, and massage to help manage my remaining pain. In addition, I also receive counseling to help work through all of the emotional trauma.
Q. Cancer Treatment Centers of America is one of our supporters for our walk on October 18, 2014. Any comments about your experience with CTCA?
A. CTCA is the most amazing place!! What you see on their commercials cannot even begin to encapsulate the magnitude of their quality. I had heard one person refer to it as Disneyland for cancer patients! Fighting cancer has got to be one of the most horrific things people have to suffer through, yet CTCA supports its patients in such a way, that you are able to look beyond the suffering at the amazing people who are surrounding you to help! Every department, every stakeholder, every doctor, nurse, tech makes you feel that you, your life, and your fight matters to them. They give you smiles, hugs, shoulders to cry on. They cry with you, they celebrate with you! They provide care for your total being. Beyond just the traditional chemo and radiation, they provide acupuncture, massage, chiropractic, occupational therapy, physical therapy, counseling, personal dieticians, and naturopaths all at ONE location! They have a chapel you can visit that has the most amazing stain glass window! They hold church service and have chaplains that come to you both inpatient and outpatient, they have volunteers who will sit with you and assist you with any help you may need. They even have a variety of therapy dogs who come to visit on a regular basis! Everyone treats you with respect and dignity. They also have an amazing cafeteria with healthy, organic, delicious food prepared by chefs. They have a juice and coffee bar where they make drinks to order. They give discounts on food and drinks to their patients and their caregivers. They have a salon with very caring and knowledgeable staff who help you choose a wig and help cut and style your hair as it is growing back in. They also provide manicures and pedicures. Once again they provide discounts to patients and their caregivers. I could go on and on about all of the amazing people who work here and make it the incredible place that it is. When I walk through the doors of the CTCA I feel an instant comfort. No matter who I interface with that day, I know that they are there to support me. The amount of gratitude I feel for the CTCA is truly indescribable! I think to truly be able to understand its magnitude, you would have to experience it yourself! There really is no other place like it. Another service that they provide is transportation to and from the center and to off site appointments! My transplant facility was all the way at 90th Street and Shea. They would pick me up at home and drive me there every other day throughout my transplant process. This is an amazing service. Between the meds you have to take and your weak and sickly times, it would not have been possible for me to drive myself. When you are battling cancer, you have nonstop, daily appointments, trying to find someone who could drive you to all of your appointments would be extremely challenging! In addition, they drive your family members and caregivers to and from the airport! The drivers were also very professional and caring!
I get teary anytime I think of those nurses and techs that cared for me while I was inpatient! They were so amazingly gentle, respectful, patient, and helpful. I was truly hard work! It would take two of them to help me just sit up in bed because of the excruciating pain in my arm and back. Yet, they always took the time to gently ease me up, help me stand up, help me in the bathroom. They kept me clean and yet respected my dignity! The night nurses would come in and talk with me when I was having anxiety. I got to know each of the regular nurses that cared for me. I asked about their lives and their families outside of work and I felt like we became friends. I feel they all went above and beyond to care for me! When they see me healthy now, they are always in awe after how sick I was while they were caring for me. So many of them call me their miracle patient!
Q. How are you today?
A. I am cancer free! I still continue to have daily pain in my back, arm, and joints. I still have a long way to go for strengthening but I have also come a long way! I can no longer run, bike, or snow ski which makes me sad as they were three things that I really loved to do. I do not have a full range of motion in my arm with the rod, but I am very thankful for what I do have! My hair is growing back! My life still consists of regular doctor appointments and probably always will. It has become “my new normal.” However, because I have relationships with all of my team at CTCA, I do not look at it as a negative thing. I look forward to seeing them during my visits! I am alive and so very thankful! I am FINALLY beginning to feel like myself again!
Q. How has fitness helped your fight and recovery?
A. When my battle began, I was in the best physical condition that I had been since becoming a mother. I was hiking, biking and running regularly and I was strong! I honestly think that the fact that I was healthy and strong truly saved my life! As soon as I was able, I was back to excercising. I began with walking, then hiking, and now I also go to the gym. It was frustrating and sad for me at first as I could not return to my favorite exercise routine which included running and biking but I have made some adjustments and have accepted that a new routine is ok too! I have a very close friend who has been by my side excercising daily with me since I have been able! I feel that resuming my exercise has also helped in my recovery.
Q. What are your words of advice for fighters and caregivers?
A. I would say my advice for fighters would be to always look for the blessing. Even during the worst times, there are blessings too. Look around you and be consciously thankful and express your gratitude to God and those that help you! I know how hard it is to stay positive when you are fighting for your life, but I truly believe that positive thinking and keeping your sense of humor is your best weapon. Rely on your faith. I truly believe that everything does happen for a reason! Even the worst of situations, have purpose not only for you but for those whose lives you touch during the process! Lean on God when you feel like you cannot push forth another minute. I remember lying in my hospital bed exhausted, thinking I just can’t do this anymore and I would begin singing in my head the song, “Jesus take the wheel." I just kept singing that verse over and over again to try and calm myself. I also remember having conversations with God in the middle of the night. I was truly talking out loud to him asking him for strength and thanking him for all of the blessings that I was surrounded with even in the midst of the horror! I would not consider myself a really “religious” person but I do have faith and this battle enhanced my faith tenfold!!
Being a caregiver is not easy!! But please know that you make the difference! Fighting cancer is a lonely battle even when you are surrounded by people who are caring for you because the patients are the ones who actually have to endure both the physical and the emotional horror, no one else can do it for them. Being there to listen to their fears, sadness, anger and pain in addition to meeting their physical needs truly helps them stay strong and keep fighting!
Caregivers also need support! It is both physically and emotionally exhausting to care for a cancer patient! Being by the patient’s side as they are subjected to procedure after procedure, grueling side effects, pain, nausea, etc etc and not be able to protect them but just be there for whatever they need takes its toll on the caregivers!
Q. Anything else you'd like to add is welcome!
A. Fighting cancer is not an individual battle it truly takes a village and without my “village” of family, friends, community and CTCA, I would not be here today!
It is too early to know why my life’s path had to take this turn. However, I know at some point it will be made clear to me. In the mean time, I just plan on continuing to love life and the wonderful people in it who make life worth living! I will continue to focus on all of the blessings that still shone through even throughout all of the fury! I have gained a new empathy that I did not have before to reach out and help others who are fighting a battle. I plan on volunteering at the Make-A-Wish foundation to be a wish granter! This person works with the children and their families to select a wish and then work with the agency to make it happen! I am very excited about this! I feel it is the perfect match for me to combine my passion and experience for children and their families with my empathy for battling a life threatening illness. I want to be an inspiration for others!
I have always known that my purpose on this earth was to love and care about children and people in general. But now I feel that because of what I have gone through, I have even more to give and I look forward to doing just that!!
Eve was kind to do a Q & A with Estrella Cancer Crusaders. To read more, please visit this website, and go to "Faces of Estrella."
