Advice From Cancer Moms

advice from cancer moms

Caregiving for a child with cancer is loaded with challenges.  It can be easy to feel alone and frustrated as you manage your child’s treatment and recovery schedule while keeping them in school and part of a “normal” life.  School, in particular, can present a difficult environment for the childhood cancer survivor.

Recently, Cancer Knowledge Network featured the voices of several Cancer Moms as they journeyed with the cancer survivor kids.  The parents quickly discovered all they had in common while helping support one another.

Check out the great article, here!

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. 

Parenting An AYA With Cancer Research Study

parent of a young adult cancer survivor

Are you the parent of an adolescent or young adult cancer survivor, aged 14-39 years?  Just like your young adult cancer survivor child, you have unique challenges and needs.  Learning the right balance between parenting and peer, support and allowing independence is difficult!  Researchers at Hunter College have developed a survey just for you!  Now you can help another parent of a young adult cancer survivor, just like you.

From the research team:

“Researchers at Hunter College have designed a survey to better understand the parents’ unique needs, concerns, and experiences in caring for a young adult child with cancer.  Their hope is that the information parents provide helps in developing programs to support other parents facing similar challenges.  Please share this survey with any parents you know that are currently or have cared for a YA child with cancer.”

To see the survey, go here!

Interview With Cancer Survivor Wendy!

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, Wendy. She is a young metastatic breast cancer survivor who talks to us about her diagnosis, telling her son about cancer, living with terminal cancer, not being on a journey, and more!

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Lacuna Loft:  When were you diagnosed and what is your diagnosis?

Wendy:  I late March of 2004 I was putting away clean socks in a drawer and bumped up against something hard and painful in my right breast. My husband of then 11yrs had been dealing with symptoms of blood in his stools and was trying to get a colonoscopy approval at the age of 39. I had just been to my yearly gynecologist visit 5 weeks prior with everything perfectly fine. I then tried to feel what this was and it appeared to be a large golf ball sized mass. Immediate panic insued and I called my husband. I was 35 years old with a 5 yr old son. After testing and many biopsy procedures, I was diagnosed with Stage IIIB IDC Her+2 ER+ Pr+ breast cancer. Tumors of almost 9cm total were hammered with 8 rounds of chemo, a bilateral mastectomy with TRAM Flap reconstruction, 25 sessions of rads and 5 years of Tamoxifen. While that was going on my husband was diagnosed within days of my diagnosis with Stage III B colonoscopy cancer. He underwent surgery to remove 18″ of his intestine and rectum with 12 sessions of chemo post op.

Five years after my initial dx in late August 2010 I was throwing the football with our then 12 yr old son and had intense shoulder pain. After a visit to the Orthopedic Dr. he told me that I needed to see an Orthopedic Oncologist as I had what appeared to be cancer throughout my entire right humerus. After the bone biopsy I was then diagnosed with Stage IV Metastatic breast cancer and given a grim outlook that I would never be cured and die from this. I underwent 15 rad sessions and was “clean” until I reluctantly agreed to a PET scan in February 2014 which detailed progression to the lungs and chest lymphs. My outlook became even more grim with odds that I would only have 6 months of quality life left. Our son was 14. Chemo, immunotherapy, scans ensued when further progression was discovered to my axilla. Fast forward to June 2016 and I am STABLE! Our son has just graduated from HS and off to The University of Dayton in August to pursue a degree in mechanical engineering. My husband has been clean since 2004 and is now treated as a regular 50 yr old!

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

W:  At the first diagnosis I felt sooo defeated. “I cannot go through chemo, lose my hair and throw up all the time! I am way too young to have breast cancer!!!” Then my husband’s diagnosis came just days later and all I could think of was we cannot let our son be an orphan.

LL:  How did you choose to share your diagnosis with your children?

W:  In the beginning we just told our son that we were sick. Dad would have a big boo boo and mom would be taking stuff that would make her bald. Then vice versa. He did not really know the impact of the disease until my Metastatic diagnosis and them it sunk into him. He does not remember much from the first time or his dad. The impact of the teenage years is immense. Eventually he would be diagnosed with an eating disorder at age 16 which was robbing him of puberty, thriving and life. I got him back on track and he sees me just pushing through and that has taught him that no matter what you accept and move on.

LL:  Any words of wisdom to other young adult cancer survivor moms/parents out there?

W:  Be mindful and present as this moment is all that ANYONE is given so make the most of it good or bad. Accept and move on…it is very important to accept any feeling but you cannot dwell on it.

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

W:  I first turned to support through what I considered friends…unfortunately most of us have been torn apart by reality of the relationships we “have”. My parents were so negative, judgmental, and toxic I had to estrange myself eventually after I dug deep internally and pulled myself out of alcoholism to realize they were my triggers. My social worker was a great help (I never opened up to professional help before) as were my oncology nurses. New spirits showed up in my life as I became more mindful and I began advocacy work in both caregiving and patient peer to peer support. I am also a huge advocate for metastatic breast cancer spreading awareness, education and helping to raise research dollars that REALLY GO TO RESEARCH!

LL:  What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?

W:  Doctors and medical staff are very cryptic and vague in talking with metastatic patients. I wish they would engage more into the the entire patient not just medical findings (if they can’t cure it they do not know it entirely). They too could learn something. I have opened up my medical team to many areas to investigate that they may not have even considered. Listen to us…

LL:  Could you describe how your husband’s cancer affected your own cancer experience?

W:  You must accept the circumstances put forth and dig deep to find solutions that are fluid as life is full of challenges, surprises, and small victories. I experienced much judgement from those outside our relationship which was extremely hurtful but you must shut the noise out and focus on what it is important to you. Taking care of yourself first is most important, as if you are not ok you cannot help anyone else. The really surprising result of his bout with cancer was his reaction to me being terminal. Not at all what you would think in fact I am more alone than ever in our relationship and have created my own life and supportive relationships to help me pull through each moment. My mantra of 2015 has given me so much strength…”Expectations breed limitations.”

LL:  Who was your most supportive caregiver during your cancer experience?

W:  I have a small circle of trusted support each bringing different gifts of strength. All are new in my life and from many different aspects of my being. Be present always as bright stars fall from the sky and you may not even be aware of the treasurers that await you.

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)?

W:  During my first diagnosis work defined me so I continued to be functional (yes working remotely while the poison was going through my veins). Our son was another welcome distraction but my husband’s cancer was a very different distraction. My terminal diagnosis has brought fitness, nutrition, peer to peer support, and metastatic breast cancer awareness and education. I am much more mindful and truly try to be present as I have always been a person checking off lists and rushing through life. I am also on SSDI which has proven to be a great blessing.

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

W:  I call this my LIFE as I am not on a journey nor am I in a battle. Sharing has made me truly happy. This cancer was placed upon but I can use my experience to help others and hopefully help to move research in the direction of not putting us metastatic patients our to pasture to die. I enjoy showing people that cancer does not have to be an automatic death sentence even if you are diagnosed terminal as I am. I exude energy and life and encourage others to try and do the same.

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

W:  Currently I am stable with treatment every 3 weeks, scans 3-4 months while celebrating my 6th year living with stage IV metastatic breast cancer. Joyfully Celebrating a milestone I thought I would never see-my son graduated and off to college!

LL:  What do you like to do in your spare time?

W:  What spare time? I am busier now than I have EVER been! I enjoy taking some time for myself through exercise, turning inward and being present through many different and often new activities.

LL:  Could you talk a bit about your work advocating for metastatic Breast Cancer survivors?

W:  Advocacy brings me an abundance of fulfillment and joy, I have never thought or muttered the words “WHY ME?”. Why not me? If I have been challenged with this, let me turn this into something that gives back!!!

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

W:  There is no “I can’t because…” Be present, mindful and most of all practice gratitude. There is always something to be grateful in the day and it is UNFAIR TO COMPARE!”

Thank you for sharing your story with us, Wendy!

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!

The Thing About Cancer + Kids Is…

young adult cancer and kids

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!

Today, we’ve got 5 GREAT posts focused on getting to the nitty gritty of young adult cancer and kids.

[/spb_text_block] [spb_single_image image=”14097″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/tell-kids-cancer/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14094″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/three-lessons-learned-cancer-mom/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14095″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/book-review-a-monster-calls/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14099″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/waiting/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14096″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/doorways-to-arkomo-review/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first last”][/spb_single_image]

The Thing About Cancer + Tough Decisions Is…

young adult cancer and tough decisions

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!

Today, we’ve got 5 GREAT posts focused on getting to the nitty gritty of young adult cancer and tough decisions that come with it.

[/spb_text_block] [spb_single_image image=”14029″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/stopping-cancer-treatments/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14027″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/letting-go-of-hope/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14030″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/death-with-dignity/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14034″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/harsh-realities/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14035″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/young-adult-cancer-slow-down/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first last”][/spb_single_image]

Welcome Nicole!

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Nicole!

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Hello! I am a wife and mother of two, and in May 2014 I was diagnosed with ER+/PR+ HER2+ breast cancer. I was 34 years old and in the third trimester of my second pregnancy. In addition to being a wife, mother, and breast cancer survivor, I am also a daughter, niece, co-worker, and friend. All the people on the other side of those roles I fill, came together in their own way to pull me through my treatment as my support system. My treatment was comprised of chemotherapy, surgery, and radiation. The diagnosis brought my life and plans and dreams to a screeching halt in so many ways.

In addition to the typical and predictable issues those going through cancer treatment face, I also had a bloodclot in my SVC that made me sort of famous within my treatment team. That totally cemented my title of That Girl. After that little sidetrack in the midst of chemotherapy, I decided to start sharing my story on a personal blog, All About My Girls. I am hoping to help others going through a difficult time looking for those who might have walked that path before. I am excited to be a contributor here at Lacuna Loft to extend those efforts to more people!

Preserving Fertility In Children During Cancer Treatments – Live Q&A

Preserving Fertility During Cancer Treatments

Cincinnati Children’s Hospital Medical Center is putting on a live, online question and answer session for families interested in fertility preservation in children that have been diagnosed with cancer and blood diseases.

The event will take place on April 20th from 7-8 pm EDT and is free. During this event, parents will be able to chat with Cincinnati Children’s doctors who specialize in pediatric fertility preservation.

Check out this link below for more information.

 

How Do You Tell Your 5 Year Old You Have Breast Cancer?

how do you tell your daughter you have breast cancer

Being a single mother is hard and when you are sick, you are still mommy and on mommy duty no matter what.  London is my 8 year old daughter and when I was diagnosed with breast cancer she was only 5 years old.  I always say that when I was diagnosed, she was too.  London had to go through each and every step of the breast cancer process with me.

This is London’s fight…

When I found out that I had breast cancer, I immediately thought about my 5 year old daughter.  How do you explain to a child that you have cancer?  What it is?  And what it will do to you?  I didn’t know but what I did know was that I had to explain what mommy was about to go through and that she would look different for a while.  After I was diagnosed in May 2013, everything went so fast, I had no time to really think about how I would explain things to London.

I sat London down to explain that mommy was sick and that she had breast cancer.  The first thing that London asked was “Mommy are you going to die?”  That broke my heart!  My baby was scared.  It made me realize that I had to fight and be strong for her.  I explained that I was not going to die and that God had me.  We prayed together and I made sure to explain every step and process to her before things occurred.  I also tried to make sure that her world was not rocked too much because of what I was going through.  She continued to participate in cheerleading and got to to spend time with her friends as much as possible.  In addition to our talks, London was given a book from my Nurse Navigator called Mommy and Me…Taking Care of Each Other.  This book explained the process that I would go through and came with a doll that also went through the process.  After reading the book, I felt like London had a better understanding of what I was going through.

Although she now had a better understanding, it was obvious that what I was going through had a significant impact on her.  When school started in August, London began to act out and she started acting as if she was a baby again (crying, whining, and peeing the bed).  I knew that my baby was hurting but I didn’t know how to help her, so I reached out to her school counselor.  The school counselor told me that sometimes this happens when a child goes through trauma.  She began to see London on a weekly basis so that London would have an outlet.  She would draw pictures of me with no hair and make breast cancer ribbon signs.  I remember London always wanting to sleep with me, to make sure I was okay.  She didn’t even want to spend the night out.  Her behaviors went on for about two months.  Once London started to see that my hair was growing back she began to feel more comfortable.  She knew that mommy was “getting better.”

To this day, London continues to read Mommy and Me…Taking Care of Each Other.  She says that the book helps her feel better when she is sad about the cancer.  Although I am now in remission, she knows that I still have a lot of appointments and medications to take.  She doesn’t tell me but she still fears for me.  Every chance I get, I let her know that I love her and that God is taking good care of mommy.

London is 8 now and has grown so much.  She now wants to help raise money for any type cancer.  When she hears the word cancer she’s jumping to donate.  Cancer hasn’t only changed my life but it’s changed her’s.

How did you involve your kids in your cancer diagnosis, treatments, and recovery?  Did you find any helpful resources or tips along the way?

Welcome Tameka!

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Tameka!

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Tameka Johnson was diagnosed with Osteosarcoma (bone cancer) at the age of 13. She had been in remission for over 20 years when she was diagnosed with stage 2 breast cancer at the age of 31. She is a single mother to an intelligent 8 year old little girl.

Her experiences with cancer have taught her a lot about life and has allowed her to meet great people along the way. It is her goal is to advocate, educate, mentor, and support those fighting childhood or breast cancer. She wants to show the world that she not built to break no matter what life throws her way!