Motherhood After Cancer Comes In Many Forms

kitchen scene

We shared this beautiful piece on our social channels when it first went live after Mother’s Day but we just couldn’t help ourselves from sharing it again here.  For many young adult cancer survivors, conversations around fertility and family building are hard, sometimes even triggering.  My own fertility issues and struggle to become pregnant is one of the few pieces of my survivorship I speak very rarely about.  Sam Watson, CEO of the Samfund, shared her own perspective in a must-read piece.

“’You may never have kids.” “The chemo will probably zap your fertility.’  ‘You need to start treatment now… there’s no time to talk about the rest.’  I was 21 and had just been diagnosed with bone cancer. At 23, I was diagnosed with secondary Myelodysplastic Syndrome and no further conversations about family planning were had…  For anyone who is struggling with the concept of what makes a parent, I firmly believe that it has nothing to do with whether or not you share DNA.  There are many paths to parenthood, none more or less equal than any other.  In the end, parenting is about love, plain and simple.  I am every bit a “real” mom to my two kids, both of whom I adopted at birth.”

Read the rest here!

When To Say When

sleeping boy and kitten

When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.

In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.

Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.

We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.

This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.

Deciding to stop cancer treatments is a difficult and painful decision.  Have you experienced something similar?

This post was originally published on Lacuna Loft back in 2014 and is one of our most read!

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 #7: When to Say When

stopping cancer treatments

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 #7: When to Say When, 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 tomorrow!

….When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working…..…

……

Read the rest of the article here!

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!

Flashback #17: 8 Years Of No Good Cancer

no good cancer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #17: 8 Years Of No Good Cancer, written by Michele. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….It’s been eight years since I put on the necklace, eight years since I felt the lump under my skin. And it’s been almost eight years since I first heard those words: “Michele, it looks like you have thyroid cancer.”

It was a Friday afternoon in late November, two months after my wedding and the day before my husband and I were planning to go pick out our Christmas tree. My doctor said those words, and then she made two calls, and just like that, I had appointments with a surgeon to remove my thyroid the day after New Year’s and an endocrinologist to manage my care forevermore after the surgery.

My husband and I drove home in mostly stunned silence, but for my confused questioning: “I thought I was doing everything right. I run. I don’t smoke. I eat blueberries, for god’s sake.” I knew all too well even before that day that cancer doesn’t discriminate, but I still never expected that it would happen to me.

My thyroidectomy was a little more than a month later, but on November 30, 2007, I became a cancer survivor. I felt physically just the same as I had the day before — which is to say, completely fine — but my life had been separated into two distinct periods, one before cancer and one after…

……

Read the rest of the article here!

Flashback #19: How To Tell Your Kids About Cancer

how to tell kids about cancer

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #19: How To Tell Your Kids About Cancer, written by Jenn. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….I think the worst day of my life was the day my husband and I chose to tell our young boys about my cancer diagnosis. We both knew we had to tell them sooner rather than later. Things move fast in a household turned upside down when cancer barges in. I had already been home from work for a few days, recovering from a biopsy and then meeting my surgeon for the pathology reports and going for the seemingly endless tests that follow…..

……

Read the rest of the article here!

Flashback #26: Interview With Cancer Survivor Imogen!

young adult cancer and melanoma

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #26: Interview With Cancer Survivor Imogen! was an interview with Imogen. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….Lacuna Loft: How did you feel when you were first diagnosed?

Imogen: After what was effectively a very long and drawn out diagnosis, the actual point of being informed I had Melanoma and first main surgery were just 2 hours apart.  I was totally shellshocked.  I was confused, scared, in physical pain, and emotionally uprooted.  I still had no real idea what Melanoma entailed and spent the first few days after my wide excision on the internet reading about Melanoma and what it meant for me.  I was terrified – I had been advised it was bad and from what I was reading online I was suddenly aware of just how serious and life threatening this was…

……

Read the rest of the interview 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.

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!