Mother’s Day and Survivorship

Life after cancer can easily be compared to a snow globe.  One that has been shaken vigorously. It can feel like we are plopped down, left to figure out every aspect of life. The cancer community regularly refers to post-cancer life or living life with cancer, as “survivorship.” It certainly is a process and one that comes with some amazing days and moments, but also extremely dark and lonely ones as we adjust to this new life and grieve our old one.

For gynecological cancer survivors, especially survivors of cervical cancer, Mother’s Day can come with an array of feelings. It can be one of the harder days for us, where we find ourselves digging deep for joy. Cervical cancer treatment, more often than not, steals reproductive ability leaving the patient with the decision to pursue fertility preservation or to begin treatment right away. This decision alone can be extremely overwhelming and is one of the first ones the patient must make. Unfortunately, not all patients are given the option, and if they are, not all can afford the cost, leaving the patient to decide….life or death.

Cervivor Dusty & her mom

We recently asked the Cervivor community how they were feeling about the upcoming holiday. As expected, we received a wide range of responses. Prior to asking our community, we thought that perhaps it all depends on where you are in your survivorship. However, most all responses conveyed loss. Even those who had chosen not to be mothers prior to their diagnosis and those who were already moms acknowledged that there is loss and pain in our community that centers around this choice that is often snatched from our hands. For many women in our community, they choose to focus on their own moms and find joy in those relationships. Dusty and her husband chose not to have children prior to cancer, but she recalls her mother’s loving kindness on this day, “My mom spent Mother’s Day the year I had cancer with me, taking care of me as the painful side effects of my treatment became too much. It’s a bittersweet memory that reminds me just how wonderful my mom really is.

Paulette and her husband (far right) with her mother and extended family.

Paulette is another cervical cancer survivor who made the decision long before cancer, that she did not want to be a mother. Her approach to the holiday is to honor her own mom,” I chose to not have children, so I’ve never felt the loss of never being able to be a mom. I have a difficult at times relationship with my mom, but I do respect her and celebrate that day with her.”

Sadly, there are also women in our community who have both lost their mother’s and their own ability to have children, making Mother’s Day doubly difficult. Heidi lost her mom nearly eight years ago, but the grief is still vivid, “Mother’s day is very difficult. I lost my own mom in 2000. And because of the cervical and uterine cancer, I lost the chance to get to have kids of my own that I really wanted.”

Being a mother prior to cancer doesn’t exempt you from the pain of losing fertility. These women can be overlooked in the discussion.

Cervivor Ana and her two children.

Ana, who was a mom at the time of her diagnosis confesses, “I grapple with being grateful for what I have and sad for the loss of not being able to have more children.”

Mary and family.

Mary is another survivor who had children prior to her treatment. She admits that having that decision taken out of her hands feels unfair,” I am grateful for the two I have and, I considered myself done so I’m at peace with what it is. I hated that the option was taken off the table for me, but I had to live for the ones I have.”

Like all other aspects of survivorship, grieving fertility and/or motherhood looks different for everyone. It’s not linear. Some days are just better than others. For some women, like Tina who never had the opportunity, reminders are always there but it can hit harder and out of the blue like in this conversation with her neighbor.  “When I first moved into my neighborhood one of the moms said to me ‘my daughter can’t wait for you to have kids so she can babysit.’ I was at a loss for words. I love celebrating my mom, but I find it to be a hard reminder of what was taken from me.”  There are many Cervivors like Lauren. Lauren lost her fertility at a very young age. She chose treatment to save her life, but not without costs that she lives with daily. Mother’s Day hits hard for me. As do pregnancy announcements and baby showers. Lost my fertility due to cervical cancer at 23. Knowing I won’t ever be pregnant is hard sometimes.” 

Tina and her fur babies

Cancer is just unfair. The diagnosis, the treatment, and the life you’re left with after can feel like a shell of who you were before. Survivorship is hard, and many days can feel harder than cancer itself. Like all other aspects of our new life, we must find ways to process, heal, and exist in our new bodies and minds. Often it comes down to choosing how we will approach Mother’s Day and what is best for us. It’s not a one size fits all. Some of us will find it is best to avoid certain places, while others are able to lean into celebrations of mothers in our lives. Some Cervivors will go about their day as any other day, while some will find healing in the shear acknowledgment that they are alive. Cervivors like Danielle will hold their children just a little closer that day, “I got my first all clear of stage 3b March 20th. I am a mother of 3, not only is this the most beautiful Spring I have ever seen, but the most precious Mother’s Day I will ever know.

Wherever you find yourself this Mother’s Day and however you are choosing to spend it, Cervivor wishes you a day of peace and joy! We are Cervivor.

My Son Pulled Me to the Finish Line

Who would have thought I would make it to my 17th Mother’s Day and be cancer free? Answer: my son.  I was diagnosed with stage 1b1 squamous cell cervical cancer a few weeks before Romeo was going to turn 7.  How do you tell your six year old that you have cancer? How would he react? Could he handle something like that at such a young age?

I remember telling him on the day I was diagnosed.  I got out my physiology and anatomy book and turned it to the page showing the woman’s reproductive organs and asked him to come sit with me on the couch.  I explained to him that I was sick and that I had cancer.  He had seen commercials and movies where people had cancer so he understood what I was saying.  I pointed to the picture and explained to him about where it was and how the reproductive system for women is the place where babies grow.  He then said, “Does this mean you won’t have any more babies?” I remember smiling sadly at him and saying, “I think so.” And then he asked the question that I think most children would ask.  “Are you going to die Mom?” My immediate answer was “No.” I never even thought about the fact that I could die.  He then said “I’m sorry Mom.” and gave me the sweetest hug.  I think many people go through the five stages of grief when they find out they have cancer.  Denial, anger, bargaining, depression, and acceptance.  I skipped the first four stages and went straight to acceptance.  I never asked, “Why me?” I simply thought “Why not me?” Cancer ran rampant in my family so the probability of me getting cancer didn’t seem far-fetched.  I’ve been getting my Paps since I was 16 and have never had an abnormal Pap. In early 2007 I’d had a normal pap and didn’t experience symptoms until around October and November and I faithfully had my doctor check me multiple times and nothing was there. The end of January 2008 my boyfriend, now husband noticed blood after intercourse so I knew something was wrong.  That Monday I was going to the doctor to have moles removed from my right breast and I asked them to check again.  I’ll never forget that day.  As she examined me she said “There’s something down there” and I was like “My NuvaRing?” and she shook her head and said there was something else.  She went and got my gynecologist and he told me to just relax and breathe and hold still.  I felt him pull on something and I felt liquid.  They took whatever it was out of the room and had me sit up.  When I sat up I was sitting in a small pool of blood.  He told me there was a mass that wasn’t really attached to anything and he was able to remove it and they were going to send it for testing stat and that he would see me on Friday.  The wheels of my mind had already started spinning and for some reason, the word cancer floated through my mind.  That night I went to the American Cancer Society and put in my symptoms and cervical cancer popped up.  For some reason, I knew that’s what it was without an official diagnosis yet.  On Friday I went back to my gyno and he asked to examine me one more time.  After the examination, he looked at me and shook his head and said. “Minus the small lesion on your cervix, I would have never thought you had cervical cancer.” He shook his head again and said “We checked you multiple times last year and it wasn’t there and all your tests were negative” He then gave me a big hug and said, “We’ll send you to Iowa City and most likely you’ll need a hysterectomy.”  Since I went on ACS’s website earlier, I already knew that was one of the choices that I would have to make.  I did not want a hysterectomy! After all, I was only 32 and I had always dreamed of having a little girl after I had Romeo or twins even.  I wanted to have another child so badly that I carried around this cute picture of these twin babies from a Pampers ad that I saw in my wallet.

Flash forward to the University of Iowa Hospital and my oncologist giving two options: remove just my cervix (radical trachelectomy), or a radical hysterectomy where they would keep my ovaries and fallopian tubes.  My oncologist stated that the chances of the cancer coming back in the first five years would be higher if I had the trachelectomy.  There was no mention of options to preserve my fertility at all.  It was either or.  I even told him why my mom and my husband was there that I did not want the hysterectomy but by going by what he said, that seemed to be the best option.  I remember signing papers saying that I knew I was giving up my reproductive rights.  That was probably the second time I cried during my whole journey.  Romeo never showed that he was scared, even when my parents argued with him that he was too young to go to Iowa City for my surgery.  He insisted on going and I wanted him to go.  He wanted to be there for me and I was so thankful.  He kept me centered.  He kept me calm.  He was my rock.

Shondria and her son Romeo

On March 27, 2008, I had my surgery.  I remember him saying “Ma I love you and I’ll see you when you wake up.”  I hugged him and the rest of my family and they took me back.  The doctors asked me if there were any questions and I remember telling them honestly that I was terrified of the surgery.  I was shaking so bad that my teeth were chattering.  They reassured me everything would be ok and they gave me something to help calm me down a little and they gave me an epidural for the first time since I didn’t have one with Romeo and I remember them laying me on the operating table still shaking and me saying I couldn’t feel my lower half and then being put under.  When I came to, the first thing out of my mouth was “I want to see my family.”  As soon as I saw him I squeezed him as hard as I could without causing myself more injury.  We did it! I was now cancer free! The healing process was long and hard but Romeo and Matt were by my side.  Romeo pushed me around Walmart in a wheelchair when I couldn’t walk anymore!  When I talked to my general practitioner, she said she had tested me for HPV and it was negative.  To this day I get an HPV test and every single one of them has been negative.  After I found out that there was a vaccine that could guard against cancer-causing HPV, I immediately talked to my son about it.  After explaining to him about the majority of cervical cancer cases are caused by HPV and that there are other cancers caused by it, he asked to be vaccinated.  I was so proud of him.  A few years ago I asked him how he felt when I was diagnosed with cancer and if he thought I was going to die.  He said he was scared that I might but since I never acted like I was going to die, he wasn’t really worried.  Funny enough, my mom said almost the same thing.  I seemed strong to them even though I never felt like I was.If anyone can take anything from my story I would like to say this.  You know your body better than anyone else.  If you know something is wrong, keep having them check and if they won’t, find someone who will.  Talk to your children honestly and explain to them the facts of HPV and the cancers it causes and about the vaccine.  In regards to fertility, go with your instinct.  It was devastating to make the choice that I made because no one talked to me about fertility options and I wish someone had because my choice would have been completely different or I would have had my eggs preserved.  Ask questions! You are your best advocate!  My son is now 17 and will be a senior in the fall and I treasure the fact that I can still celebrate Mother’s Day with him and watch him grow.

 

Shondria is a 10 year cervical cancer survivor and resides in East Moline, Illinois with her husband and son. She will be attending her first Cervivor School in Cape Cod this September.