Mother’s Love

crib mobile

I will never know a mother’s love. Let me be clear, because this is not about MY mother. For as long as I can remember, I knew that I did not want children. I did not have a single shred of desire to be a mother. I am sure that being a mother is great, in the same way that eating a raw onion and garlic salad would be just lovely for some people. I am not one of those people.

Motherhood never interested me in the slightest. For me, pregnancy seems unpleasant. I was accidently there at the moment my nephew was born, and I swear my ovaries jumped out of my belly button and ran away. I mean sure, not-so-baby nephew is adorable as are all of my nephews and nieces. But the single best part for me is that being an aunt means I can spoil them rotten, pack them full of Oreos and ice cream, and send them home. I love those kids, but they are not born of me.

Through this cancer journey, I’ve become aware of certain things that make me very lucky in unusual ways. I was already in a position where I had been permanently sterilized. I did not have any fertility to preserve or lose. When the social worker brought it up, I was almost dismissive, which probably seemed cold and insensitive, but I had just found out I had incurable brain cancer, and frankly, my uterus has always been more trouble than it was worth. Not only was I lucky that this was a non-issue for me, but as I became more involved in the cancer community, especially the young adult groups, my eyes were opened to a major emotional blind spot that I had simply never noticed. When I noticed this blind spot, I had a moment of despair, not for the children I would never have, but for the cancer survivors, my close friends, who I knew desperately wanted children and had the option ripped away from them, often literally cut out of their future. Inside of them lives the evil of cancer and the everflowing fountain of love for children who will only ever exist as tragic ghosts hiding in the deepest corners of regret.

I see my sisters and brother, and the neverending love they have for those children. They sacrifice, they give everything to make their children’s lives better every day, all night. I honestly don’t know that I could do that. Raising a family is hard, and knowing just how hard my own mother worked is humbling. Am I just too selfish to be a mother? Maybe some people just aren’t meant to be mothers. In the meantime, my cancer journey has revealed a special secret to me. Some people have that overflowing abundance of mother’s love. I have somehow been blessed to have acquired additional mothers over the past year. My friends’ mothers look out for me. They love and support me like I am one of their own. COVID quarantine keeps visits rare, but they reach out in a way that makes me feel the abundance of mother’s love. I will never know mother’s love as a mother, and although that makes me wonder what legacy I will leave behind, I know that there is so much love flowing from mothers that I never have to feel alone. To all of my mothers, near and far, I love you as only a daughter can.

– Melissa Mateo Blank

How would you respond to the writing prompt, the image of a crib mobile?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Spring 2020 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

What Is It Like To Carry A Child?

ovary supression

Lately, the song by Peter Gabriel “I grieve” from the movie “City of Angels” plays on repeat when I see babies, baby clothes, little kids, blasted strollers and families in general while at the store, the mall, freaking Cracker Barrel.

I have to almost step outside of myself in order to NOT have a breakdown. Though some days are better than others, I can’t seem to fully accept this permanent loss.

What hurts the most is I will never have anyone who looks like me or inherits the way I tilt my head when I’m pondering or laughs like me.

As an only child, I have always enjoyed my own company. My imagination is huge. Now I wish I didn’t have such a huge imagination because I keep imagining what a son or daughter might’ve looked like.

I tend to focus my grief of being medically induced into menopause on not having anyone to look like me because I grew up just knowing my mother’s side of the family. Thanks to divorce when I was two, I never met anyone on my father’s side until I was 35 years old.

I look nothing like my mother. I look nothing like her side of the family. I have struggled with that.

There is no one to carry on my name. It literally stops with me.

What is it like to actually carry a child? Thanks to cancer, I will never know.

by Megan-Claire Chase

How would you respond to the writing prompt, ‘Ovary Suppression’?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Summer 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

How To Navigate Being Single And Infertile

a smiling cancer surviovr

Megs is a strong and courageous warrior who has shared several of her stories with us.  This is a segment of one of her latest pieces where she discusses navigating being single and infertile after young adult cancer.

…I never had the discussion nor was counseled about fertility preservation. What is a single 39-year-old with no prospects supposed to do when the oncologist says you need 16 rounds of chemo and then asks if you want to freeze your eggs in the same breath?

For me, I felt an insane amount of pressure and fear because I just wanted the cancer out of me. Once I was told I needed chemo asap because my tumor was growing aggressively, I couldn’t focus on anything else. How could I even think about freezing my eggs when I didn’t know if I was going to live or die?…

You can read the rest of her beautiful piece here.

Infertility

infertility after young adult cancer

I saw the cutest little boy at Target, maybe he was two or something, wearing the most darling sweater vest and bowtie. I couldn’t stop looking at him. Before I knew it, I was crying; just silent tears rolling down my cheeks. It was a punch in the gut because cancer took away my option to have my own child.

Yes, I know there are many children who need a home and could foster or adopt. I actually want to smack people when they make that insensitive comment. Why can’t they see how much it hurts me to know I’ll never have someone who favors me or inherits my talent?

What is my legacy?

I somehow ended up in the children’s section while at Target. I couldn’t stop the torture. Every tutu, dress, bowtie and little shoes caused a tear and my breath to catch in my throat.

It’s funny that I think about children at least once a day. I had convinced myself pre-cancer that I would never have any and didn’t want any. They are too expensive. What if they are premature like I was and filled with health problems? Plus, I’m single, so end of story.

Yet, when my oncologist and gynecologist said it’s best to have a hysterectomy and bilateral salpingo oophorectomy to lower my chances of a breast cancer recurrence since my body suffered such horrible sided effects from all the post treatment for pre-menopausal women, my heart stopped. The final step was to medically induce me into menopause many, many years early and hope my body will respond well to the post treatment for menopausal women. Plus, the surgery would completely prevent me getting cervical, ovarian, uterine cancer and endometriosis. Sigh.

I collapsed into tears. Do I want to live or die? Thanks to cancer, my insides are already dead.

by Megan-Claire Chase

How would you respond to the writing prompt, Reproductive Endocrinology & Infertility?

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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors.  The participants met for 2 hours each week, for 8 weeks during our Winter 2018 session.  This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week.  If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.

Putting Motherhood On Hold: Cancer + Family Planning

motherhood after cancer

I had been so caught up grieving my future as a mother, what I couldn’t have and what was lacking that I was missing out on opportunities to live and to thrive.

This post has been a long time coming, but I had been waiting until the inspiration struck in order to share this side of my story. After sitting down to read the first the first chapter of the wonderful new book “The Courage Club” by fellow survivor Katie Campbell, I knew it was time to bear my soul in the areas of fertility, family planning and my feelings on motherhood.

For as long as I can remember, motherhood served as the compass for my life. I always loved children. I’d spent my childhood, my education and many years of my first career in avenues dedicated to bettering the lives of children. All of these activities and passions took me towards my end goal of motherhood.

Along the way, I also looked for a partner in crime who shared my desire to start a family. Lucky for me, I hit the jackpot. It started slow and grew into an all in, head over heels, do anything for each other “Big Love.” In May 2014 we tied the knot.  Little did I know that the love I felt for him on that day would be challenged and grow exponentially with every hurdle we faced together over the next two and a half years.

After our wedding, we went on in typical married fashion with home projects, time with friends, a new puppy and saving to start a family. We thought we had it all planned out. We researched and read and better ourselves with the goal of being the ideal parents. My husband quit drinking, we modified our lifestyle and we saved a large sum of money so that I could stay home for the first year with a baby. We amassed a collection of pregnancy and baby books and constantly talked about what the next year would hold for our family.We shared our perspectives on parenting and talked about baby names. The only thing we were waiting on, was the OK from my doctor. I had been on an IUD for 2 years and she wanted me to wait 2-3 months after the removal before we started TTC (trying to conceive).

This just so happen to occur around the same time that we sold our home to a wonderful single mom with two boys and found ourselves  “homeless”. We were looking for a new home and a neighborhood perfect for raising a family. The housing market in our area was cut-throat and we couldn’t seem to catch a break. We put in offer after offer to no avail. Thankfully, my MIL took us in which immediately brought the baby making plans to a screeching halt. I began to feel stuck, depressed and lost in limbo land waiting for the next stage of our lives to begin. Finally, we snagged a home, our 5th offer and the best one yet. Though our living situation was doable, we couldn’t wait to get back to a space of our own and get back on our charted course. Little did we know that something larger than our housing woes would knock us off the tracks.

Cancer came barreling into our lives while we waiting to close on our new home. So many exciting new beginnings while we faced the ending of life as we knew it. My diagnosis and impending treatment put our plans of starting a family in immediate jeopardy. I was devastated. Not only was I suddenly fighting for my life but my goals of motherhood on which I based my entire being and self-worth were wretched from me in an instant. Unlike the treatment for my cancer, which was actionable, I could not shake the feelings of grief surrounding the impending loss of my fertility. I grieved for the life I had planned and the dreams I was forced to put on hold. I forced myself to carry on, unsure of how to define myself without the future we’d planning waiting for us around the corner.

Luckily, my doctors recognized the urgency of these fertility concerns due to my young age and they quickly provided us with a multidisciplinary team of experts to explain the options and guide us according to our decisions. Though, it was extremely expensive even with the “cancer discount”, we decided to proceed with Fertility Preservation. I went through one round of IVF hormone stimulation (to get my body to produce multiple eggs instead of the standard 1). After the hormone stimulation, and daily doctor’s visits checking my estrogen levels, we extracted all the eggs (8 in my case) and attempted to fertilize all of them. Out of the 8, 3 successfully fertilized and grew to a state acceptable for preservation. These two weeks were the most emotional and stressful time out of the entire treatment. The waiting was excruciating. My body was pumped full of hormones and everyday I was brought to tears by the slightest triggers. I felt my body had failed me again only producing 8 eggs, when the doctor had hoped for 10-20. My heart was racing each day, waiting for the lab to call with a report on our eggs and embryos. I knew the statistics were low and we’d be lucky to end up with a few fertilized and acceptable embryos, but when they said only 3 made it, it broke my heart. Those embryos represented all the hope I had for our future family. I wanted to have as many chances as possible to bring me comfort and security moving forward. Unfortunately, that was our only shot and I had to begin chemo the next week so we had no choice but to accept the results and move forward.

After the grief and sadness, would come anger, jealous and fear. Everyone around us seemed to be moving forward and we were stuck, held back and left behind. They were getting on with their lives, getting pregnant, having babies and planning for the future. As much as I wanted to be happy for them, it was soul crushing. The unfairness brought me so much anger and the root of all my anger all came back to fear. Who was I without the ability to have children? Would my marriage sustain? How would I find purpose in life without the goals of motherhood that I set out to achieve? Would I spend every day pining away for the far off day when the doctors would allow us that possibility?

While I wish I could say I had a grand epiphany, a magic moment that helped me move forward from this discomfort…the truth is far from it. I began journaling regularly, created a blog and made it a point to find ways of taking control of my life despite the fact that cancer threatened to break me. In the midsts of this turmoil, I came to love myself on a deeper level. I committed myself to self-compassion and self-love because I realized, I AM WORTH IT. As I found the strength to carry on, I grew more and more proud of myself. I found new levels of joy in my life the more I took control of my own happiness. I began to feel a little less lost. The more I connected with other survivors, and shared my story and my pain, the less alone I felt.

Little by little I stopped thinking about babies nonstop and began dedicating that time and emotion to rediscovering myself, my husband and finding new things I am passionate about. We made time to explore new interests, get involved in advocacy, and redefine our goals. As I grew emotionally and professional, I began to redefine success. I am now able to see more purpose in my life beyond motherhood and I am coming to value myself more. We still want children, but we have been able to reset the compass and move forward on a new path, one that doesn’t focus solely on motherhood, an area in which we currently have no choice or control. If all goes well with my health, we can reevaluate family planning after 3 years of hormone and ovarian suppression. That means September 2018 is our next checkpoint, but who’s counting? For now, we are focused on enjoying each day and finding new ways to strengthen our family of two (+ Sophie). I hope that by sharing my struggle with fertility and cancer you don’t feel so alone and that you too can find peace in time.

Originally published on mycancerchic.com

Side Note: During our Summer 2016 trip to Europe I came across these handmade lace baby booties in Brussels. I had recently drafted this post and I was drawn to these booties as a symbol of our hope for the future. 

Interview With Cancer Survivor Nadia!

young breast cancer

Today we are continuing with one of our features, personal interviews!  You can read our past interviews here.  Today Lacuna Loft talks with cancer survivor, Nadia.  She is a young breast cancer survivor who talks to us about her diagnosis, her support system, sharing her diagnosis, her fertility journey, and so much more!

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Lacuna Loft: When were you diagnosed?

Nadia:  I was diagnosed January 2, 2014 with Estrogen/Progesterone/HER2-neu positive Invasive Ductal Carcinoma, more commonly referred to as Triple Positive Breast Cancer. Originally my doctors thought I was stage I, maybe stage II, based on the mammogram/ultrasound/MRI/biopsy findings. However, during my bilateral mastectomy, the breast surgeon found a second smaller tumor, precancerous cells throughout my breast, and cancer in my lymph nodes. She removed 15 lymph nodes to test them all for cancer. Pathology showed cancer in 6 of those lymph nodes and with all this information I was swiftly “upgraded” to stage III and was told that I could possibly have stage IV breast cancer. Thankfully, my PET scan came back clean and I never thought I would be so happy to “just” have stage III cancer. After a few weeks of recovery from my surgery, I started 4.5 months of chemo – 4 rounds of Adriamycin (a.k.a. the Red Devil) and Cytoxin, and 12 rounds of Taxol with the immunotherapy, Herceptin. I would take Herceptin for a full year and during that time we would add another immunotherapy, Perjeta, to go along with it. After the 4.5 months of chemo finished, I did 1.5 months of full-breast radiation. During this whole time, I was also undergoing the painful and complex reconstruction process with tissue expanders, which would be exchanged with implants almost a year after radiation finished to maximize the chance for the radiated skin to heal properly. After radiation completed, I also started hormone therapy treatments, which I have to do for at least 10 years. These medications essentially put me into daily menopause and I constantly deal with the symptoms and side effects of depleting my body of estrogen, such as bone loss, muscle and joint aches and pains, hot flashes, and many other extremely unpleasant and frustrating issues to be dealing with at such a young age.

LL: How did you feel when you were first diagnosed (physically, mentally, emotionally)?

N:  I had just turned 31 when I was diagnosed and had no family history. I lived an extremely healthy life as a Forester that hikes every day in steep, mountainous terrain for work. Snowboarding, splitboarding, telemark skiing, mountain biking, and hiking were just some of the activities that were a part of my normal routine. I never felt sick, I just happened to find a lump, so I was shocked when I found out that I had cancer. My husband and I live in California, but my family and his parents were back in New England. When we found out that my treatments would take a minimum of 10 months, we decided to move back east to have the support of our family and seek care at the Dana Farber Cancer Institute – growing up with the Jimmy Fund so deeply interwoven into the fabric of MA, there was just no other place I wanted to be when I heard those words, “You have cancer.” I was terrified, and was completely uprooting my life to enter the unknown. That initial period when everything was so new and I didn’t have a treatment plan was the worst. I felt like my life had spiraled out of control and there were so many scary decisions to make. Lumpectomy or mastectomy? Keep the healthy breast or remove it to minimize the chance for new primary breast cancers? Reconstruction or not? Then there were the things that I didn’t really have a choice in. Chemo, radiation, immunotherapies, hormone therapies. Of course I had a choice, but not really if I wanted to accept the standard of care for my diagnosis and give myself the best chance for survival.

There were also the implications the treatments could have on my fertility. The chemo regimen I was given is notorious for permanently and negatively affecting ovarian function. My husband I were hoping to start our family when I was diagnosed, so this news was a complete shock. We were catapulted into fertility consults and IVF cycles to harvest some of my eggs prior to chemo. The process was confusing and overwhelming. To add to all that, there was also the complication regarding what we would do with the embryos we were able to freeze. Because my cancer is hormone driven, and those hormones spike during pregnancy, my doctors wanted me to do years of hormone therapy before allowing me to try and get pregnant. We had offers from both our sisters to be gestational carriers, but they are both older than us, so if we went that route we would have to move fairly quickly. To this day, the fertility issues have been some of the hardest struggles of my cancer diagnosis and treatment.

LL:  Can you share more about your fertility journey?

N:  We recently tried to use the embryos we got from the pre-chemo IVF with my sister-in-law as a gestational carrier, but the embryo did not take and we lost our remaining embryos. It all happened so fast – we went from 7 embryos and 7 chances to 1 to none in 2 weeks. All this time, for the last 2.5 years, I knew this was a possible and probable outcome, I just didn’t bother thinking about it because we had these frozen chances. These frozen chances represented SO much hope and possibility for a life where cancer would lose its vain attempt at taking control of everything in our lives. And just like that, those chances were wiped away. Cancer just takes so much from you.

We are still wrapping our heads around all of this. I suppose all hope is not lost, but that’s a BIG unknown. My doctor has mentioned changing my hormone therapy to give me the chance to see if still have ovarian function and eggs to harvest. If I have viable eggs, there would also be a possibility for natural pregnancy in a few years after I’ve gotten enough hormone therapy under my belt for my doc to feel comfortable allowing that. And of course there are other options, like egg donors or adoption. I really just wanted this to work so our life didn’t have to be so complicated (minus the complications a baby brings into your life of course – but less complicated in the crappy medical-cancer way, which of course is no guarantee either). For now we are just trying to process what happened. For the life of me, I cannot understand how this became our life. I do not understand how we got here. I was there for the last 2 and a half years, I know what happened to me, to us, but at the same time, it seems like a dream, or rather, a nightmare. Someone else’s life. But it’s ours. And while we are devastated from this recent loss, there are still so many things to be grateful for. An amazing, loving, supportive husband. Two amazing families that have supported us through all of life’s challenges. Incredible friends. A sweet, sweet doggie. Dream jobs. A beautiful home and food on the table.

LL: Who/what/where did you turn to?

N:  My husband has been my rock. He was by my side every. single. step. Every doctor’s appointment, every treatment, every scan, every test. Everything. My parents, my sisters and their families, all of my in-laws, extended family, friends. I was lucky to have a lot of support. We lived with my family during all of the treatments, bouncing between my parents’ and sisters’ houses. My friends and co-workers in California would send me care packages all the time. My nieces and nephews were extra supportive in the way that only kids can be. They would often ask me how I was feeling and as long as the answer wasn’t terrible, the next question was when could we start playing. So I did a lot of playing and coloring and in that way, they kept my husband I sane.

I also had an amazing medical team. In addition to the doctors, I sought acupuncture, massage, reiki, and therapy. My therapist helped me process all the complex and overwhelming emotions I was experiencing, and helped me understand the nature of my diagnosis, treatments, and repercussions. She helped bring to light issues that weren’t even on my radar, so that I was more prepared to deal with them when they did arise. I knew that I didn’t know what I was doing and that there were professionals that knew so much about this experience, so I did not hesitate to ask for help.

I also turned to other women in my shoes, some walking the path at the same time as me, and others further along the path. These women kept me sane. I mostly connected with these women on Facebook, in secret groups and we literally chatted all day, every day, and even every night when we couldn’t sleep from the steroids or other drugs. Some women I “met” on the breastcancer.org site, and others I met through the Young Survival Coalition. I’ve since met many of these women in-person and I can’t tell you how special those meetings are.

LL: What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?

N:  My husband I joke that Candy Crush got us through cancer. Seriously, we played a lot of Candy Crush. Lot’s of Netflix. 24, Orange is the New Black, House of Cards, Game of Thrones. As I said earlier, I also played a lot with my nieces and nephews. I remember one day, my sister left for work and I was coloring with my niece. When she returned hours later, we hadn’t moved. She asked, “Have you seriously been coloring all day??” Yep. And we had so much fun doing it…Because my husband and I had been out of New England for 10 years, we travelled around a lot, visiting friends and family that we rarely see. We also spent a LOT of time with our dog, a golden retriever/chow mix named Chowder. He was my walking companion, and got me up and moving every day during treatments. I actually have a lot of fond memories from that time. I mean, who else can have unlimited time to spend with their family at age 31 without having to go to work? I was lucky to work for someplace that could give my husband and I the time off to deal with the cancer treatments and have the support we had in general.

LL: How did you decide to start blogging about your experiences?

N:  There was no way I could keep my diagnosis a secret. My husband and I were taking significant time off from our jobs and moving across the country. So I decided early on to just be open about it. It was going to be more stressful to keep it from people. My sister-in-law started a posthope.org webpage for me to easily keep friends and family updated. I never intended to blog about it, but many people interpreted my updates as blogging and before I knew it my site had been shared with many, many people. Sometimes that was overwhelming to me, but most of the time I just thought if I could educate some people about my experience, or help someone in a similar boat, then it would be worth being so open about my experience.

LL: Have you found support in unlikely places since your diagnosis?

N:  I have, in many ways. Early-on I was connected to other survivors that were complete strangers to me, through family members of mutual friends. These women helped me through the early, terrifying stages surrounding diagnosis. I will never forget their honesty, kindness, and compassion and I vowed that I would pay it forward and help other women down the road if I could. Since then I have connected with some women online, exchanging emails and phone numbers and making myself available for all the questions that arise when facing this diagnosis and treatment path. Unfortunately, I have also filled this role with a very close friend of mine, but I’m happy I can help her.

I also found myself in a situation where a complete stranger played a pivotal role in helping my recovery. I was concerned about having a quiet place to recover from my surgery since both of my sisters have small children and my parents’ house was closed for the winter. My best friend’s mom’s best friend’s step-mom offered us her condo in Boston since she was out of town for the winter. (In case you haven’t noticed, there is a theme of people leaving the bitter cold of a New England winter). Her place was so beautiful and peaceful, overlooking the Boston Harbor and providing us with the respite we needed so that I could heal comfortably. I will never forget her generosity.

LL: Could you describe how sharing your story has affected your journey with Cancer?

N:  I found that sharing my story has allowed me to process my own thoughts and emotions better, and feel less isolated. My posthope.org site allowed me to connect with people that supported me, and I really needed those cheerleaders through my long and arduous course of treatments. It also makes me feel better to think that by sharing my story, I could make someone else feel less isolated or make their experience just a little bit easier. There are so many issues unique to being a young adult with cancer – relationships, fertility, body image, career, identity – with cancer being much more prevalent in older adults, there just aren’t as many resources to help young adults navigate these difficult and confusing issues. If my story can help others realize that they are not alone in those experiences, then maybe some good can come from my stupid cancer.

LL:  Have you encountered any misconceptions around breast cancer and cancer in young adults?

N:  There are also a lot of misconceptions surrounding breast cancer, especially in young women. For starters, I didn’t even realize young women could get breast cancer in the first place! I also didn’t realize how many different kinds of breast cancer there are – every woman’s diagnosis and resulting treatment can be so different, it’s really hard to make comparisons. Treatments can permanently affect fertility. Mammograms do not necessarily save lives. Young women typically have dense breast tissue and mammograms are notorious for not detecting cancer in these women (my mammogram, ultrasound, and MRI did not find my second tumor, precancerous cells, or affected lymph nodes!). Young women without family history also typically do not receive regular mammogram screenings because, you guessed it, they’re too young. Early detection does not necessarily save lives. 30% of all early-stage breast cancer patients advance to terminal, stage IV cancer. And the standard of care does not screen or scan breast cancer patients for stage IV cancer because many false positives or false negatives can result, causing undue anxiety and stress when there is still nothing that can be done to save a stage IV patient’s life. Hopefully that will change (soon please!) with medical advancements. Many “pink” products to raise money for breast cancer research contain toxic chemicals and hormone disruptors that may actually contribute to breast cancer, so it is important to be vigilant about pinkwashing and think before you pink (a phrase coined by Breast Cancer Action). And the HUGE breast cancer walks (think Avon and Susan G. Komen) donate very little to stage IV research, which is what we need so women stop DYING from this UGLY, NOT-BEAUTIFUL-PINK DISEASE. These are just a few things that I was unaware of, so if I can help increase awareness about these things by sharing my story, I will do so.

LL: Where are you now in your journey with Cancer?

N:  I finished my chemo and radiation in 2014 and my immunotherapies and reconstruction in 2015. I had to tweak my hormone therapies a few times and made the last drug change at the end of 2015, so I’m adjusted to those medications finally. I was off work for all of 2014 and worked part-time through most of 2015. In October of 2015, I went back to work full-time and am just working on figuring out my new “normal.” It’s not always easy, but it is a work in progress. When I was first diagnosed, I remember thinking that I would do my surgery and treatments in 2014 and never think about cancer again. Little did I know that cancer would become deeply ingrained into every aspect of my life. It definitely doesn’t define me, and I would like to say that it doesn’t control me or dictate my life, but it sort of does. There are many moments and some days when I don’t think about cancer at all, and I hope those moments and days become more and more frequent as time goes on.

LL: What “words of wisdom” and/or advice would you give any young adult facing Cancer or another life-threatening illness?

N:  It’s ok to be scared, it’s ok to ask for help. Seek out a therapist experienced in issues common to young adults with cancer. Treatments can cause depression. If you are experiencing depression, it’s ok to take medication – you might only need to be on it for a short time to help get you out of it. The struggle is REAL. You are not alone, no matter how much it feels like it, especially when all your peers are doing normal things like going to college, advancing their careers, travelling the world, getting married, having children. Trust your gut and know that you are your own best advocate – if a treatment recommendation doesn’t sit well with you, ask questions until you understand it and make a decision that you can live with. Know that being positive isn’t all sunshine and unicorns and rainbows. It can be as simple as picking your head up and moving forward every day. And being nice to the people around you. It’s ok to be mad and sad and scared and hopeful all at the same time. There is a roller coaster of emotions that accompanies cancer. Just acknowledge and experience each one and let it pass. You can’t control much, but you can allow yourself to feel what you’re feeling without beating yourself up about it. And know that it does eventually become a little bit better. It will always suck and it will always be scary, but it can also become a little bit better.

Thank you for sharing your story with us, Nadia!

Are you a young adult cancer survivor or caregiver?  Interested in being interviewed by Lacuna Loft?  Let us know!  We’d love to hear from you!

A Fertility After Cancer Story

When you are faced with a diagnosis of young adult cancer one of the first concerns….though, obviously after the concern of making you better….is fertility.  Everyone has a different fertility after cancer story (or infertility story).  This one is mine.

At the appointment where I was handed a packet of information explaining about of the chemotherapy drugs that I would receive and what each of their side effects on my body (both seen and unseen…yes my pee was sooo red after one of them), I was also told about how my treatments could take a few different paths.  As my mother-in-law and my dad each perched on a chair, with my husband, the doctor, a fellow, and a nurse taking up additional chairs and standing room, I sat awkwardly on the exam bed in the center of the room.

I decided to be treated in St. Louis at Siteman Cancer Center (Barnes), even though I lived in Champaign, IL with its own cancer center, because Siteman had a clinical trial that could help me avoid radiation treatments while still curing my cancer.  Radiation treatments come with a load of short term side effects and also have the double whammy of bringing on a whole host of long term side effects…including more aggressive cancers later on in my life.  The main premise of my clinical trial was that I would start with a regimen of ABVD (each letter standing for a different drug that was pushed or dripped through my IV each treatment session) for half of the prescribed treatment time.  ABVD does not result in infertility any more than the average rate of infertility in the US population of young women.  After this time, I would go through a set of imaging scans to asses the decline (or lack thereof) of my disease.  If the ABVD was not successfully treating my cancer, than I would be switched to a different type of chemotherapy (BEACOPP…once again each letter standing for each different medicine) which most certainly would result in infertility.  Following the BEACOPP, I would do radiation treatments.  However, if the imaging scans showed that my cancer was responding favorably to the ABVD (meaning, the tumors were becoming smaller or disappearing entirely), then I would continue on with the ABVD for the rest of my treatments and would not receive the radiation treatments following chemotherapy.

Simple enough….but only kind of.

This all meant that before starting treatment, I didn’t know whether the chemo would result in infertility or not.  It meant that I didn’t know whether I should prepare for infertility or not.  It also meant that if I did want to prepare for infertility, I would need to do so before starting any of the cancer treatments.  I had to decide whether dealing with a future possibility of infertility was worth allowing my cancer to continue spreading throughout my body.  There were a million questions running through my mind…  The main one was…Would waiting to start treatment make my cancer harder to treat (and therefore increase the risk that I’d need the harsher chemo)?

My husband (then fiancé) and I decided to meet with a fertility specialist.  There we learned all about in vitro fertilization and the other various options that we had.  I found this meeting to be much more emotional that I had expected.  For a man, freezing sperm is a fairly straight forward process.  For a woman, you can either choose to freeze eggs or to freeze zygotes (fertilized eggs).  Freezing eggs doesn’t attach you to your current partner should you want to conceive with someone else but it also isn’t as successful as freezing zygotes.  If you’re interested in more info on the various methods of saving fertility you can read more here.  A big problem with these fertility saving treatments?  I wasn’t infertile yet!  Which meant that I didn’t have a diagnosis of infertility yet…which means that all of these fertility saving options can be quite expensive.  If you’re looking into it, make sure you ask insurance how much they will cover and then ask around about how else you can receive financial assistance.

In the end, we decided to not delay my treatments.  At the time, we felt comfortable adopting children if we needed to or even using a surrogate.

At the end of my treatments, the doctor met with us following an official round of scans showing that I was in remission.  (WOOT!)  After talking with us about what the next 5 years would be like in terms of follow up appointments and scans, she also talked to us about pregnancy.  A reoccurrence of my type of cancer is much more likely within the first 3 years following treatment and we were strongly advised to not become pregnant during this time.  The oncologist looked almost relieved that we weren’t bothered by this at all.

Now I am 3 years post treatment.  I am 28 years old and my husband and I have been living on the assumption that we will probably start having a family in 3-5 years.  Recently though, I watched this webinar on Sexual Wellness post-cancer (which is a bit boring but has a lot of info in it) and started to freak out.  Why?  You ask.  Well, in the video, they mention (a little too off-handedly in my opinion) that women who undergo chemotherapy for breast cancer often experience ovarian aging of up to 10 years…meaning their ovaries now think they are 10 years older (and therefore perform like they are 10 years older).  While I did not have breast cancer, one of the drugs that I received is shared by the two treatment regimens so I decided to look further into it.  I spent a few days stressing over the fact that my 3-5 year window that I thought I had to start having kids before I was in an age bracket considered higher in risk, might now be extremely compromised.

I played phone tag a bit with the nurse who works with my oncologist.  For about a week, I tearfully told just a handful of people how stressed and frightened this was making me…about how badly I wanted children and how my “I have a couple of years” plan was threatening to collapse.  I eventually talked with the nurse but she didn’t have a lot to tell me.  She explained that the chemotherapy treatments that I received tend to be less harmful to fertility than the one’s experienced by breast cancer patients but that she couldn’t tell me what my ovarian age was.  She just said that she didn’t know how long we had been planning on waiting…but that if we wanted to start trying now, the oncology team (and my clinical trial) would be ok with it.

Thinking about our future, with kids, without kids, and/or adopting kids is stressful.  Worrying about my fertility after cancer is stressful.  Thinking about being healthy enough to have kids is stressful.  Realizing that one.more.thing might be outside of my control is even more stressful.  Cancer has done so much to me and to my family and I’m ready for its control to end.

This isn’t reality though.  Cancer is part of my journey and whether or not I have my own children is also something I will just have to experience as it comes.

What has been your fertility after cancer story?  What have you learned?

P.S.  For a whole lot more information, visit the Fertile Hope website.  If you are going through something similar, here are a few questions you should keep in mind when talking to your doctor.