Teens&20s Is Launching And They Want To Hear From You

person at desk developing infographic

Our friends on the Together team at St. Jude Children’s Research Hospital are pleased to announce the launch of Teens&20s, a mini-site for teens and young adults who are childhood cancer patients and survivors.  Together needs feedback to help make Teens&20s the best it can be.  If you are a cancer patient/survivor age 13-25, please spend some time checking out Teens&20s and then take an anonymous survey by October 13.  While supplies last, participants who complete the survey will get a $10 gift card.  (Participants may choose from a variety of major retailers.)  Together is a comprehensive online resource for pediatric cancer patients and their families no matter where the patient receives treatment.

Check out the survey here!

Tell St. Jude What You Want To Hear About

people collaborating

A team at St. Jude Children Research Hospital is developing a tool called Together!  It is an online resource for pediatric cancer patients, survivors, and families.  They are currently developing content for teens and young adults and they want to hear from you!  To guide and inform them, they are conducting an online survey of adolescent and young adult cancer patients and survivors ages 13-25.  The survey is anonymous, is open through May 20, and they will use the information and opinions shared to help them create articles, visuals, and videos that will be helpful and informative to adolescents and young adults who are facing cancer.

Check out the survey here!

What do you think are the most important pieces of content adolescent and young adult cancer survivors need?

Program Partnership with Hot for Hope – Support Group for Kids Whose Parent Has Cancer

child support group

Lacuna Loft is excited to announce that we are partnering with Hot for Hope to bring a support group to the kiddos of our young adult cancer survivors.  If you are a young adult cancer survivor and you have a child between the ages of 8 and 17, they can attend an online support group with other kids who understand what they are going through!  The groups will be moderated by a registered nurse, Jenny Yessaian.

These support groups will happen monthly, with the first one starting on Thursday, October 12th.  If your child is between the ages of 8 and 12, they can attend the online support group from 5-5:30 pm PT / 7-7:30 pm CT and if your child is between the ages of 13 and 17, they can attend the online support group from 5:30-6 pm PT / 7:30-8 pm CT.  Each support group will take part via video chat and Lacuna Loft will email you with details before the group starts.

These groups help to support the social and emotional development of children coping with a parent with cancer. Each group will meet on a monthly basis for 30 minutes in length.

Flashback #8: Letting Go Of Hope

hope and childhood cancer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #8: Letting Go Of Hope, written by Dana. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….From the moment I was told, “Your son has cancer”, I had hope. I was filled with it. It was the feeling I had when looking over treatment plans. It was what I thought I heard in the doctor’s voices when they were telling me what we were going to do next. It was the word I heard the most often from people.

“We are hoping for the best.”

“We hope that the chemo works.”

“We are holding out hope for a miracle.”

“Don’t lose hope!”

It was the name given to the Facebook support page. “Hope for Sebastian”. It was on the t-shirts we had made. Hope was everywhere….…

……

Read the rest of the article here!

Let’s Talk About Sex

sex after young adult cancer

This post is brought to us by Jennifer!  If you missed her interview with Lacuna Loft, you can find it here!  You can find all of her posts here.

“Let’s talk about sex, baby. Let’s talk about you and me. Let’s talk about all the good things and the bad things that may be… let’s talk about sex.”

– Salt N Pepa, “Let’s Talk About Sex”

The speed at which your head spins upon getting a cancer diagnosis eventually stops. You right your course; you hold your head up and barrel through invasive tests, treatment and surgeries. You may lose body parts. You may go into ‘I don’t care just get it out of me’ mode. You may cry, break things, and climb under the covers for as long as you can withstand not having to eat or pee. It’s all normal and it’s all okay. There is no right or wrong way to deal with cancer. There will be a time when you catch a glimpse of your pre-cancer life after the haze of treatment. Maybe you’ll go shopping or out to lunch. Perhaps you’ll make time for a quick mani-pedi with a friend or enjoy the solitude of sipping a cup of coffee alone in a café. In pieces, it comes back; a subtle reminder of the complete person you were pre-cancer. But in the trenches of treatment we may forget, in addition to human beings, we are intimate sexual beings as well. That is typically the last piece of the puzzle to fit into place.

The words sexuality and cancer, when used together, are an oxymoron. How can you possibly feel desirable, or attractive when you’ve been chopped up and put back together? As a breast cancer survivor I frequently refer to my Franken-boobs, for they are unlike any other body part I was familiar with. They feel numb, alien, foreign and far from sexy, trust me, they are just for looks. Add to the extensive surgical recovery the indignities of chemotherapy: nausea, mouth sores (and sores in other areas where you have mucous membranes … wink, wink) and both diarrhea and constipation. If you need radiation you may have to deal with extreme fatigue and often painful burns and blisters. Good times? No. Sexy times? Not even close. But one thing I realized during my first visit to Cancertown is that intimacy is even more important than sexuality. If you are as lucky as I am to have a kind and extraordinarily patient partner, you realize that way, way, way before the physical must come the emotional. Being intimate with someone is so much more than a bump and grind between the sheets.

When I was in active treatment my husband and I set up a routine, which, unbeknownst to us, built intimacy. While I was on disability the first thing we would do in the morning was go for a long walk at a local park. Sometimes holding hands sometimes not. There were times I wanted to be touched and times I needed to be self –contained, he respected that boundary. We would frequently grab a coffee and a bagel on the way to treatment (I found heavy starchy carbs to be great at keeping the nausea at bay). After treatment, if I felt well enough, we would go for a light lunch. We would sit across from each other in a booth, sometimes talking, sometimes reading the newspaper, sometimes doing the mundane like paying bills or making the week’s shopping list but we sat there, together. That’s intimacy. Once the hard-core chemo was done, and my appetite back to normal I still had to contend with my monthly Herceptin infusions. I would schedule them for late morning so that we could have our Herceptin lunch dates, afterwards. We were side by side, together. It wasn’t a turn-on but it was intensely comforting. I set the pace and the boundaries and he respected that allowing intimacy to grow.

As my hair began sprouting and I lost that deathly pallor that cancer embedded into my skin I began feeling pretty good about myself. I could totally rock the buzz cut and cancer gave me a bit of swagger. I was a badass and I sure as hell worked it. My husband’s desire for me was always there … I just had to be ready to accept it. We started slow; there were many nights of simply snuggling, holding each other and talking. When I finally felt ready I asked my nurses for any tips and or tricks because my body, I could tell, was so different than it had once been. Their advice? “Oh sure honey, just use lube and protection.” Ummm, okay.

Armed with a vat of KY and a box of condoms I decided to tentatively step back in the sexytime ring, but within seconds my lady parts were screaming ABORT, ABORT, ABORT. See, my nurses never told me that using KY would be akin to sitting upon hot coals. So no. No sexytime for us that night.

When we were over the trauma of the fire crotch we tried again, but this time with coconut oil, which is truly the bomb-diggity! Was it great? No. Was it better than I expected? Yes. I felt a part of myself come back to life. We took time to build up the intimacy, which eventually bridged the gap, to desire, which then led to the good stuff. I got my groove back. We got our groove back. Then I found out I had cancer again.

This time my damn hormones were the driver, which meant after the bilateral mastectomy, after the DIEP flap reconstruction, after the drains, after the chemo and after the hair loss I was scheduled for a full hysterectomy. I was quickly being stripped of any and all femininity. Being put into chemical menopause twice before I even hit age 45 and then having all my lady parts removed was a real hit to my libido. All I could envision was myself quickly aging into a hairy, sexless troll. Sure I knew we had the tools from the first visit to Cancertown but could we do it again? Would I ever feel like an intimate sexual being again?

The short answer to that is yes. Like a camel that can go weeks without water while trudging through the hot dry sandy desert we, as sexual intimate human beings, can go quite a while without sexytime. The key is to build intimacy. Intimacy comes in many forms but at its root it’s about being together, communicating and understanding the boundaries and limits a loved one with cancer may be dealing with. It’s not easy and there is no set timeframe. Listen to your body and to each other. Remember, your partner may be terrified of hurting your newly scarred and reconstructed body as well. Talk through your fears and your feelings. Explain your needs and the ways your body has changed. Be honest and embrace each little pre-cancer piece that returns after the long dry spell.

Interview with Cancer Caregiver Tisha!

cancer mom

Today we are continuing with one of our features, personal interviews! You can read our past interviews here. Today Lacuna Loft talks with cancer mom and caregiver, Tisha. She is a cancer mom, taking care of her young child diagnosed with leukemia.

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Lacuna Loft: When was your child diagnosed and what was the diagnosis?

Tisha: My youngest child, Jace, was diagnosed with Acute Lymphoblastic Leukemia in January of 2013. He was 2 years old.

LL: How did you feel when your child was first diagnosed?

T: Physically, I didn’t feel much. I was going on pure adrenaline for the first 6-9 months. I knew I had to be my best in order to care for him so I did what I could do keep myself healthy.
Mentally and Emotionally it was draining. Between dealing with outside supporters, two full time jobs, our girls, family members, and my own emotions, it was a lot and definitely took its toll on my mind and heart.

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

T: On the way to the Dallas Children’s Hospital, I put in motion a team of people to take care of many things: meals, house, pets, caring bridge, and other social media communications, and a team of close friends and teachers to help with the girls. That specific team all met at the hospital that morning and brought the girls to us. We had them circle up around them as we told them. Each person was from a different part of our lives (church, schools, friends, parents) and we knew they would be able to support our girls (then 12 and 8) whenever we could not.

LL: Any words of wisdom to other young adult caregiver moms and dads out there?

T: Wherever you are, whatever you feel, let yourself be there. Don’t let others who have not walked in your shoes tell you how you should be feeling or where you should be on your journey. There’s not one emotion you could describe that would surprise me as I’ve felt them all. Sometimes you have to even be cautious of the voices you hear in the childhood cancer community, too. Surround yourself with what I call “the circle of trust” (those that you completely trust and those who allow you to be where you are). I kept my circle small and told them the REAL stuff, but for the majority of people I came up with a blank phrase that updated them on Jace but didn’t reveal too much.

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

T: My husband and I depended a lot on our church family. We call them family of choice as they are not true family members but we do life with them daily and they are the ones that pray for us and care for us just as family would. Had it not been for us learning the big lesson of asking for help, we would not have survived. Our marriage would not have survived if we did not have them pouring positivity into our days and nights.

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

T: We were pretty lucky. We were both surrounded by a great church family, supportive co-workers, and some incredible doctors and nurses. Thankfully, we learned early on to reach out in when we felt we were drowning. It was a lesson we’ve learned over and over. As people, we were never intended on walking this journey alone. Thankfully, we are now part of the Children’s Hospital Family Council where we give input and help doctors and nurses make the process smoother for families and patients like Jace.

LL: What kinds of things did you do to distract yourself and your child during treatments (either
at home or at the hospital… Or both)?

T: We did A LOT. Movies, made up games, video games, paper airplanes, crafts, singing and dancing, reading, and board games. Being in isolation is a very difficult thing and in fact, isolates you not only physically away from the germs but isolates you emotionally from people in general. That is a hard thing to get used to when everyone you know is out having fun. One of Jace’s favorite things was building a blanket fort and just resting with his iPad. It made him feel like he was in a different place most times.

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

T: Sharing our story has empowered me and I think it has done the same for our family. I know many times other cancer parents shy away from being so vocal and outgoing about their journey, but because I’m a people person and a writer by nature, blogging about our experiences and being able to give those on the outside a glimpse of what life was like inside the arena really did educate many of our supporters. It made them understand some of the specifics on his treatment and helped them know how to help in real ways.

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

T: Jace has been off treatment since May of 2016! He still visits his Dr monthly for checkups and blood draws so they can ensure he is continuing to heal. He is having a great time in 1st grade and will be in the Children’s Hospital of Dallas’ Christmas Parade this weekend!

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

T: I love to read, write, play the piano, cheer on our favorite football teams and spend time doing anything with family.

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

T: Take care of you. It’s easy to forget about yourself while trying to help your child survive and watching them go through some horrific days of treatment. Have someone close to you keep you accountable, someone that is going to come in the area and help you up when you fall. If we do not take care of us, we will never be able to fully take care of those we love the most.

Photos by Dani Welch Photography.

Thank you for sharing your story with us, Tisha!

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!

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.

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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.