By: Patty Murray, Chairwoman and Co-founder of Hope for Two…The Pregnant with Cancer Network
I learned this valuable lesson 21 years ago, just after finishing six months of intensive chemotherapy treatments, while at my radiation Oncologist’s office being fitted for my foam radiation cradle. It all began when I asked, what I perceived to be, a very straightforward question, “Where are we going to radiate, doctor?” With a puzzled look on his face, he paused, backed up and blurted, “That is a very good question. I really don’t know.” My husband and I were stunned.
It was my understanding, up to this time, that the medical community had treatment protocols for every ailment and disease. When they were confronted with a particular malady, they would apply the protocol and a certain percentage of success would be achieved. What I slowly learned during my eleven months of treatments is that there isn’t a consensus of opinion among health professionals as to how to treat any particular medical condition.
The reason I had asked the question in the first place was that there were varying opinions as to whether my excised tumor in the axilla (arm pit area) and the affected lymph node was a secondary tumor and that the primary tumor was still in my breast, which couldn’t be found during pregnancy due to a number of factors. After delivering my son, I had a breast MRI and they were convinced that the primary would be found in my breast. However, it wasn’t found because either the chemotherapy eliminated it or the primary was in the axilla which was removed during my lumpectomy. So the question, “Where to radiate?” was a reasonable one. He pushed his rolling chair away from the examination table and said that he was going to a Radiation Oncology National Conference that weekend and would consult with his colleagues. Meanwhile, he directed us to, “Go onto OncoLink and do some research. When you give me a call next week we can collaborate and see what each of us came up with.” Inside my head I was screaming, “OncoLink, a website, I don’t even have a computer.” He advised us to go to the nearest Public Library. Thank God that the doctor’s back was to us, as my husband and I exchanged quite an impolite look.
After our initial anger, we realized that we had to become our own health quarterbacks; to take our health decision into our own hands, which took three full weeks. We decided to phone or visit every doctor and medical center that we ever came in contact with and ask their opinion. The opinions varied greatly- from full breast radiation to a double mastectomy. Finally, we asked my medical oncologist and agreed with his decision to continue with four more rounds of a different chemotherapy and follow it up with six weeks of full breast radiation.
What we learned from this was three-fold. One, that you must take an active role in guiding and managing your health care. This is your life and you are the best one to manage your care. Otherwise, many medical mishaps could occur.
The second lesson is that once you make a decision, never look back. When you research, ask questions, weigh all the options, and then make an informed decision, embrace it and know that it is right.
The third lesson is, instead of being angry that no one has become your quarterback, realize that it is in your best interest to happily don that jersey. Instead of being a passive bystander, you are now an active participant in your healing. This fosters both your physical and mental healing. I am not unique when I say that when I was diagnosed, I was thrown into a tailspin, sensing that I was out of control. I was like a ship without a rudder, without a captain, in a sea of chaos. Once you become the quarterback or captain of your ship, you begin to feel more in control. You are now a part of the team where you transform from the passive angry patient into an active director whose actions and attitudes effectuate positive outcomes.
These lessons and the word captain reminds me of the famous scene in the movie DEAD POETS SOCIETY, starring Robin Williams, where he was a non-conformist English teacher in a New England boarding high school. He quotes Walt Whitman’s poem about Abraham Lincoln which begins, “O Captain! My Captain!” He emphasizes that words and ideas can change your world. I believe, like he, that you can change your world when you become the captain of your own ship. Williams finishes with, “Listen, you hear it… Carpe… Hear it… Carpe Diem… Seize the day boys. Make your lives extraordinary.”
Until next time, seize your life, because it is so EXTRAORDINARY! ✿
How my story begins: I was a happy mom of two boys, a happy wife to my husband of five years. I was in the process of going back to work as a paraprofessional after being a stay at home mom/mobile makeup artist. I enjoyed my small hometown, the beach, parks, and time with my family. I was team mom, a volunteer at the school. But I had not been getting my yearly screenings or tests. In fact, it had been seven years. I was also excited about the news that we were expecting another baby.
I was excited and eager to go to the obstetrician to make sure everything was going great. About a week before my appointment, I started having some bleeding and could feel that something was out of place. My mind went straight to what I thought would be the worst case – that I was miscarrying. I called my obstetrician and got in early and he reassured me that the baby was great! I just seemed to have a polyp on my cervix and it was large and causing the bleeding. He then said it was as simple as removing it in office and I’d be on my way.
But I was not on my way. It bled excessively upon removal and I had to be admitted and get stitches, all at my very first obstetrical appointment. It was very traumatic and scary but I was glad to be released the next day and home to relax. Things were well other than the usual morning sickness and such. My son sprained his leg and needed crutches, so I called to cancel my obstetrical follow-up appointment. I was told I really could not miss it and the doctor really needed me to come in. I instantly felt anxious. Nonetheless, I called my husband and he met me there so he could sit with my two boys during the visit. I was told the nurses would stay with my boys in the waiting room and my husband should come in with me. I declined (I’m super overprotective) and once again they said it would be best. So I obliged.
My doctor tells me that they sent the “polyp” off to be biopsied and it came back as highly invasive squamous carcinoma. He was showing me the lab results and pictures on paper and pointing them all out on the chart in the room. I just sat there sobbing a bit before asking for clarification that he is in fact telling me I have cervical cancer. “Yes, yes you do. I will be referring you to an obstetrical oncologist right away.” He also told me I needed to come to terms with the idea that termination may have to be considered. I quickly gathered myself (the best I could) and put on the brave mom face for my boys and left the office. I decided before he even finished his sentence in that office I could not terminate. I believe that if God brings you to it, He will see you through it. I then was referred to the obstetrical oncologist, who after reviewing my results and exam, said it was caught in the early stage of 1A-1B.
How I felt after diagnosis: I felt isolated, although I did most of the isolating. I kind of retreated to my bed and wasn’t social at all. Because of my diagnosis, I wasn’t able to be excited about being pregnant. Instead, I was constantly worried. I didn’t feel able to share our pregnancy with anyone except very close family and a select few friends. I also felt fear. I let all the possibilities run wild in my mind and I thought about the worst case scenario, and about my kids and husband. I found research online and come to find out it’s incredibly rare to have this type of cancer while pregnant. So there isn’t a whole lot of research and treatment plans to choose from, which made me doubtful.
Telling my family and friends: I was with my husband when told my results, and I waited for it to process for a few days before then telling my mom, sister, brother, and my husband’s parents. I hadn’t told others about the pregnancy either, so I didn’t share my cancer diagnosis socially. I finally told extended family and friends and social media when I became five to six months pregnant and started to show. I told them all in one big blog post to Facebook. I know that’s a big bomb… I also requested limited contact. I didn’t want all the questions and sympathy calls, etc. I struggled with “help” and receiving “support.” I still have not shared my cancer diagnosis with my boys, whom are only seven and nine. They are young and, in my opinion, don’t need the worry and burden of it.
Elizabeth with her husband and children
My treatment: I was scheduled for a LEEP/cone biopsy* to remove the remaining cancer from my cervix as soon as I entered my second trimester. I was able to stay awake during the procedure, which they normally do not allow (I didn’t want to be put under while pregnant, although I wouldn’t recommend it now, LOL). I was shown my baby before and after the surgery to ensure he was still just as great as before. And he was! After, I was then told there wasn’t anything further I could do like scans, surgery, chemotherapy, or radiation, until after the baby was born and that due to hormones it could spread if they missed any and be prepared for treatments after. At 37 weeks and what seemed like million complications later, my son Oliver was born in January of 2016. He was a healthy weight and length and the only issue was he was born with not enough brown fat so he stayed in the neonatal intensive care unit for a bit. But we did it! We both made it to that first goal I set for us!
After the birth, I was told I needed to have a hysterectomy to prevent recurrence and to be sure we removed all the remaining polyps and cancer cells. In April 2016, I had the surgery, which turned out to be good for me. They found different levels of CIN** in my uterus after the biopsy. At my eight week follow-up with my obstetrician (he performed the surgery), I was told that I was cancer-free and just needed to follow up every six months.
*LEEP: Short for loop electrosurgical excision procedure; removes abnormal tissue by cutting it away using a thin wire loop that carries an electrical current.Cone biopsy: An extensive form of a cervical biopsy; removes abnormal tissue that is high in the cervical canal. It is called a cone biopsy because a cone-shaped wedge of tissue is removed from the cervix and examined under a microscope.
**CIN: Cervical intraepithelial neoplasia, also known as cervical dysplasia and cervical interstitial neoplasia, is the potentially premalignant transformation and abnormal growth (dysplasia) of squamous cells on the surface of the cervix.
How I felt after treatment: I felt relieved that the cancer was gone, I knew I didn’t want more kids after my third, but the option not being there whether I wanted it or not still wore on me a bit. I felt like I had been not feeling well for so long. I really thought that this would be my light at the end of the tunnel so I could go back to my happy, normal life. But cancer took more than my cervix, uterus and fallopian tubes. It took the ability to live without an underlying fear of it returning.
What was most difficult for me: The most difficult part for me was the thought of anyone losing anyone. I didn’t want to lose my baby, or my boys to lose their mom, or my husband to lose his wife. I also struggled with the physical impact it had on me. I felt like I lost a year with my boys that I will never get back. I wasn’t able to attend all their games and take them fun places all summer like usual. The guilt that they, too, were suffering from my disease was horrible. Also, my husband and intimacy issues stuck around because of all the physical recovery.
I also feel it took a toll on everyone that is close to me – my mom, sister and brother, too. We lost our dad to cancer very fast after diagnosis and we are still grieving his loss, so it was hard to tell them. I definitely tried to keep it to myself a lot more to keep from burdening others.
What I did to help myself: I turned that frown upside down! I just had to think of it in a more positive way. I am alive, I have all my boys and we are all for the most part pretty healthy. Cancer gave me a new outlook – it allowed me to see how precious each day really is. I turned to faith and trusted in God’s plan for me. I looked at what I could do instead of dwelling on what I couldn’t and I set small goals for myself.
My life after cancer: My life after cancer… it feels good to write that! …My life after cancer, my life after cancer, my life after cancer is good. No – it’s great! I have a few other health issues I am currently dealing with, but I am here and I am a changed person. My outlook has completely shifted in a better direction. I am glad to be looking into the future and what it holds for me and my family.
Where I am today: I am in a good place. I can talk about it now. I don’t get emotional about it as much as I used to because I have accepted its role in my life. I am a proud mother of three boys and happy wife of five years. I am an advocate and I am a Cervivor!
What I want other women to know: I want you to know how important it is to go for your yearly exam and screenings, and to ask for HPV testing. I want you to educate yourself on your own body. Listen to your body – don’t ignore symptoms. There is no shame in taking care of yourself. Also, help prevent your children from having to encounter HPV and cancer by getting your daughters and sons vaccinated. Ask questions.
Elizabeth found Hope for Two after being diagnosed with cervical cancer in pregnancy and delivering her son Oliver. She has recently become a certified volunteer support woman for our network in order to offer hope and support to others facing a similar experience.
Do you still have cleavage with just one breast? is one woman’s intimate story of her struggle to navigate a breast cancer diagnosis received while newly pregnant and recently married. Author Sue Lawrence chronicles her emotional experience in a series of journal entries.
Sue’s story is shared with a frankness and vulnerability that makes the reader feel present in her endeavor. She concisely puts to paper every raw emotion encountered during her journey back to good health, deeply exploring this diagnosis’ impact on her fledgling marriage and role as a new mother. We arrive at the realization that one can experience a range of emotions surrounding a cancer diagnosis, all of which are acceptable. This cathartic examination concludes with beneficial “Tips for Cancer Warriors” which she shares at the end of her book.
Do you still have cleavage with just one breast? is available for purchase through www.SpringtimeBooks.com and www.amazon.com . For details about receiving a signed copy, contact the author directly at: suelawrence.rejoice@gmail.com.
From the bottom of our hearts, we thank all of our generous donors who attended and supported Hope for Two’s 20th Anniversary fundraising event on April 27th in Buffalo, NY! We truly hope you all had a fantastic time!
We’d love to hear from those of you who joined us- please share your insights and/or pictures from the event by emailing info@hopefortwo.org or posting to our Facebook page!
Thank You “Rocking with Hope for Two” Sponsors and Attendees:
The Board of Directors of Hope for Two…The Pregnant with Cancer Network wish to extend our sincere thanks to everyone who attended and donated to our Rocking with Hope for Two 20th Anniversary Celebration fundraising event at Asbury Hall in Buffalo, NY on April 27. It was a tremendous success again this year! The generous support of our donors and sponsors enables us to continue to see growth in our ability to meet the needs of women diagnosed with cancer during pregnancy. We are able to support these women and their families by connecting them with a volunteer support woman, providing updated information and offering hope at such a challenging time. Thank you for allowing us to continue fulfilling the needs of so many women and being part of that support!
We would like to extend a special thank you to the following sponsors:
Holidays are traditionally viewed as a time to celebrate. Many people enjoy reuniting with family and friends, giving and receiving gifts, and celebrating religious traditions during this time. However, sometimes people with cancer and their loved ones feel “out of step” from the rest of the world during the holidays. In fact, the holiday season can prompt new questions, such as: How do I take care of the holiday rush and myself at the same time? How can I celebrate when I have so many other things on my mind? What will my life be like next year? Sharing these concerns with the people you love and who love you can help you feel more connected.
Here are some additional tips for coping with cancer during the holidays:
Make plans to get together with friends, family or co-workers over the holidays. Trying to celebrate alone can be very difficult, so accept some invitations from others, or join an organized group activity through your local YMCA, YWCA, church or synagogue. Find the right balance between celebrating with family and friends and spending the time you may need on your own. Give yourself permission to pace your activities and to decline an invitation or two so that you have the energy to enjoy the gatherings that are most important to you.
Create a new holiday season tradition that makes the most of your energy. Change your usual holiday activities so you relieve yourself of some of the pressures of entertaining. Have a “pot luck,” with family members each bringing a dish for the meal, have someone else host the meal, or suggest eating out at a favorite restaurant.
Enjoy special moments. Try to focus on new traditions that have been established, rather than dwelling on how cancer has changed a holiday or special occasion.
Talk to your health care team about upcoming special events. They may be flexible about appointments in order to accommodate travel or other needs.
Be an innovative shopper or gift giver. Use mail order catalogues, shop over the telephone, or try online shopping this year. You can also make a gift of sharing your thoughts and feelings. Write a short note or make a phone call to let others know that you are thinking about them.
Express your feelings in ways that help you receive the support of the important people in your life.Tears can bring a sense of relief. Laughter can be relaxing. Sharing can be comforting. It is common to experience a mixture of anticipation, excitement and apprehension about the future. Let your feelings breathe, and talk them over with a loved one, friend or professional counselor.
Celebrate strengths you and your loved ones have developed. Many families who face the day-to-day challenges of cancer discover strengths and courage they didn’t know they had. Reflect on the strengths you have developed, and build on them during the holidays.
“Still My Mommy is the story of a little girl whose brave mommy is fighting cancer. Fighting cancer makes her mommy look a little different so she wonders if her mommy will still be the same.”
In 2013, Megan Pomputius received an ovarian cancer diagnosis while raising her two year old daughter. Her diagnosis and treatment led to many questions from her child, motivating Megan to write a children’s book to help other mothers and families facing similar circumstances. Written from the child’s point of view, Still My Mommy is a helpful resource for families to assist young children in understanding that even though many physical changes may occur during a mother’s illness and treatment, she remains the same person. An easy read, reassuringly addressing common concerns faced by many families coping with this experience. Thoughtfully illustrated by Andrea Alemanno.
Stephanie Hosford, a member that came to us for help in 2008 and has been a valuable Hope for Two volunteer support woman, has penned a well-written story of her nine month roller coaster ride of being a mother of one, adopting a child from China, and then finds out that she is expecting another child just days after being diagnosed with breast cancer. Suddenly, Stephanie, a 37 year old Occupational Therapist and a tri-athlete from Los Angeles, was fighting for her life, her children, and her sanity. The book was born out of her blog by the same name, where she chronicled her crazy journey. She takes readers on a gut-wrenching, tearful, and joyous ride, from the first days after hearing the words, “You have cancer” to the tender homecomings of her new baby and then her adopted daughter. Her personal story is filled with hope, humor, and examples on how to find your inner strength when you need it the most.
Bald, Fat & Crazy is available for purchase at Amazon, Barnes & Noble, and any independent bookseller.
