Impact of Cancer Study

woman jumping

My name is Jess and I am a PhD researcher working at Edge Hill University in Liverpool in the UK.  My PhD study is investigating the psychological impact of cancer in teenagers and young adults who were diagnosed in their teenage and young adult years.  Particularly, I am looking at the psychological impact in survivors who are in recent remission (received confirmation of no evidence of disease within the last 2 years).  It is my hope that this will lead to the development of an intervention in order to better support teenagers and young people transitioning back to their previously held lives.

Right now, I am looking for individuals to take part in a questionnaire study looking at the psychological impact of your cancer experience.  It can be completed anonymously online and should take no more than 15-20 minutes.

If you are:

  • currently aged 18-30
  • were diagnosed with cancer between 16 and 25
  • have received confirmation of no evidence of disease within the last two years
  • were not diagnosed with a brain/CNS tumour
  • did not receive any form of cranial radiation
  • were not diagnosed with a mental health condition prior to your cancer diagnosis

then you are eligible to take part!  Please follow this link to take part.

If you are unsure of anything or have any questions, please don’t hesitate to email me at popeje@edgehill.ac.uk

Flashback #23: Interview With Cancer Survivor Jenn!

breast cancer survivor

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 #23: Interview With Cancer Survivor Jenn! was an interview with 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!

….Lacuna Loft: What was your biggest parenting challenge during cancer treatment and into survivorship?

Jenn: I lost my job during treatment so I used the opportunity to volunteer at their schools and participate as team mom for the sports they played. Yea, I was the bald mom at football practice and in art class but I used it as a teaching moment for all the kids. Some asked to see my head without my hat or scarf and I happily obliged. I wanted my kids to know that no matter what I’d still be their mom and I’d always be there for them. The toughest part though was when another child told one of mine that I was probably going to die. I had to do a lot of damage control, I certainly couldn’t predict the future but I couldn’t have my kids living in fear either. I always tell them (still to this day) I’m fine right now….

……

Read the rest of the interview 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!

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!

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!

Interview With Cancer Survivor Erinn!

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, Erinn.  She is an adrenal cancer survivor who talks to us about her diagnosis, her support system, and so much more!

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

Erinn: It was September 8, 2014, after weeks of blood test, urine samples and CT Scans, I received a phone call while at work from my Endocrinologist. Prior to the full work up, I originally went to a Dermatologist because I was breaking out on my arms. While at that appointment, she referred me to an Endocrinologist who took a pint of blood from me to run tests. After I was told that my cortisol levels were through the roof, she scheduled me for a CT Scan. I was told at my scan that the results should be in within a few days. Maybe 3 hours after my CT Scan my doctor called me at work and told me she had scheduled an appointment with a Surgical Oncologist that week. Once I was at the appointment, my surgeon told me that I was diagnosed with Adrenal Cancer, and she had already scheduled my surgery for October 1, 2014. After removing a tumor the size of a grapefruit from my left adrenal gland, it was confirmed that I was diagnosed with Adrenocortical carcinoma.

Months later, after being in and out of the hospital for pain and weakness, I had a PET Scan done in May 2015. It was then that several masses were found on my pancreas. June 8, 2015, I had a endoscopy biopsy, in which they tested the masses on my pancreas. On June 10, my fathers birthday, I was diagnosed with Pancreatic Neuroendocrine Tumors, a rare type of Pancreatic Cancer.

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

E: When I was first diagnosed with Adrenal cancer I was in shock, disbelief, and numb all at the same time. Everything from that moment on moved extremely fast. I was unusually calm prior to my surgery, but the day of my surgery I was nervous. The second time around, I hit rock bottom. That was one of my lowest moments.

LL: How did you choose to share your diagnosis with your friends/co-workers?

E: I told my friends as soon as my surgery was scheduled. I am very active on my campus, so I couldn’t go missing for a month and not have people ask questions. I told those that were close to me, one on one. I wanted until my recovery to tell my coworkers what was going on, because life changes completely after surgery. The second go round, it worked the same way. My friends were a little more in tune with my health, so they were ready to support me. My co-workers didn’t know until my tentative surgery date.

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

E: I turned to my family and my friends the most. They are an amazing support system. They are the original eBelievers. EBelievers is a non profit that I founded and am currently in the process of getting off the ground. I had my bad days and I turned to music those days. I absolutely love music, from the instrumentation to the lyrics and over all production.

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

E: My first go round with Adrenal Cancer, I didn’t get a second opinion. Hind sight is always 20-20. If I could go back and get a second opinion, I would.

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)?

E: I always have my headphones with me. They are the perfect distraction. I also usually hace a journal or notebook that I take notes on, or just draw in. While in the Palliative Care Unit, they allow me to paint ceiling tiles, as well as music therapy, and pet therapy.

LL: Have you chosen to share your story through video, blog, or radio? And if so, could you describe how sharing your story has affected your journey with Cancer?

E: I have shared my story in almost every medium you mentioned. Sharing my story has become my way of helping others with family members have hope. I am big on family, and once you tell me someone you care about is sick, but my story inspired them, we become family at that point.

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

E: Right now I am a one year Adrenal Cancer survivor and we a currently watching my Pancreatic Cancer for any new developments. Things could be better, but they have been worse so I count each new day as a blessing.

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

E: In my spare time, I love to go out with my friends, catch a movie, and do anything to enjoy every moment outside of the hospital.

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

E: Always do your own personal research and don’t just listen to your doctors. Ask questions, it’s your life, take it by the horns. But most importantly, don’t lose your smile.

Thank you for sharing your story with us, Erinn!

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

Interview With Cancer Survivor Imogen!

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, Imogen.  She is a melanoma survivor, talks to us about her blog, parenting during a cancer diagnosis, doing her research, and so much more!

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

Imogen: I have lots of moles & freckles & had noticed a Mole on my back that had changed.  I was told by my GP they thought it was OK but I pushed for a referral to the Dermatologist clinic at the local hospital.  Over the course of 9 months I was seen by 3 different dermatologists who all advised that the Mole was ok (they used a tool called a Dermatascope which checked the cellular makeup inside the mole).  The mole continued to change & grow and was starting to catch on my clothing. I was concerned so went back to my GP & demaded it be removed.  The local GPs agreed to do this in their minor procedures clinic – an appointment was scheduled for 2 weeks later.  The GP who removed it advised I was a “young pretty lady who wouldn’t want a big scar” so he said he would just shave the mole off & they could always take more another time if necessary.  There were delays with the biopsy and the local computer systems failed delaying the report even further.  I had been told they would contact me if there were any problems and I hadn’t heard anything so I brushed it to one side.

5-6 weeks after the shave excision (mole removal) I received a letter in the post from the County hospital dermatology unit asking me to urgently attend an appointment the following week to “rule out cancer” – no other explanation was on the letter.  The following day (a Saturday) there were 2 further letters advising me not to cancel and stressing the importance of the letter – 1 was from the surgery doctor asking me to call on Monday morning so they could talk to me.  On my way to work on Monday I called them up and the GP advised they thought it might be skin cancer and that the hospital would probably want to take a wider excision of skin to be safe.  The next day – Tuesday 11th June 2013 at 11:15 am I was advised by a Macmillan cancer nurse that I had Melanoma. They knew it was melanoma and said it was bad but they didn’t know how bad until they took more skin.  She didn’t really explain what melanoma was but gave me a leaflet and sent me home saying they would be back in touch to arrange the further surgery.  I was called back in 2 hours later.  The procedure was done by a Dermatologist on a examination bed in an office – I was conscious throughout and can still smell the cauterising of the flesh now.  I left hospital a few hours later with a 7 inch scar down my back.  My life would never be the same again.

LL: How did you feel when you were first diagnosed?

I: 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.

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

I: My children saw my scar – they could see how scared Mummy & Daddy were – but we didn’t tell them that I had Cancer or Melanoma.  We have gradually drip fed additional information to them over time.  They were only 7 and 6 years old when I was diagnosed and were too young to be told the full facts until they needed to. I didn’t want them to loose their childhood as well as potentially their Mummy.  It was a burden my husband and I felt they didn’t need at such a young age – it was bad enough to see Mummy getting all these scars.

LL: Any words of wisdom to other young adult cancer survivor moms (and dads) out there?

I: Do whatever is best for you and for your children.  All Cancers and patients are different – so what works for 1 patient and their family won’t work for another.  My children understood that the scars (baddies) were because of Moles and the sun. They understood that I had the scars to take baddies away and that the doctors were going to keep seeing Mummy to make sure the baddies didn’t come back.  Over time they have learnt more and have seen me go through other procedures and recently even came to hospital with me and my husband when I went for a CT scan.  I started writing a blog about my experiences, so that in the future when they are older they can look back on it and read what happened to Mummy.  I didn’t know when I would die (thankfully I am still here 2 ½ years after diagnosis and I am thankful for that every day) and because I wasn’t sure what would happen to me and because everything was happening so fast I thought a written record would help my children process everything I was going through – even if I wasn’t around to tell them.

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

I: My husband and immediate family and friends were all amazing.  The issue was I was having to update everyone at first almost daily with developments and this was both time consuming and emotionally exhausting.  So one of the good things about writing a blog about my experiences every day was that extended family and friends could read what I was going through and were kept updated without me having to re-tell the same story 10 times a day.  The blog was soon read by all of our friends and family and shared among the wider circles of people we knew.  Writing became cathartic – like therapy.  I could process my anger and sadness and pain through my words.  It was, and remains now, my lifeline.

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

I: Many Melanoma patients struggle with the emotional burden of the diagnosis.  I am aware that there are Macmillan nurses and counselors available and my Macmillan nurse was very supportive for the first month – but she soon moved on to other patients and I was able to process my feelings myself because I have such a strong network around me – I am lucky.  However there have been many times when I have felt sad or in need of help and I haven’t had a contact at hospital that I could reach out to – which I think is a shame.  All cancer patients should know the telephone number or email of their Cancer specialist nurse / counselor so that they can get support whenever it is needed.

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)?

I: I looked online and did a huge amount of research.  Melanoma can’t always be treated with drugs – sometimes you need to “watch and wait” for it to progress and spread before you can get access to drug treatments.  As a result I was very keen to see what I could do to improve my chances and odds for survival.  Diet and exercise are extremely important to me.  What you eat and how healthy you are can greatly impact your immune system.

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

I: I started blogging in September 2013 – not long after I was diagnosed – I had been keeping a journal for the previous months so I uploaded that information & carried on from there.  My blog is read by over 2,000 people all connected with Melanoma in the UK.

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

I: Sharing my journey has been therapeutic and helped me process my pain – but more importantly it has given me strength.  Through writing I have gained knowledge of the monster I face that hides dormant inside me at present.  I get contacted every week by other melanoma patients and have been involved with Melanoma awareness and patient advocacy activities all over Europe.  I work with a group of like-minded people who strive to improve the standard and continuity of treatment and care for Melanoma patients all over Europe.  I recently formed a not for profit organization called Melanoma Patient Conference C.I.C with the intention of providing an impartial annual conference where patients can obtain the latest information about treatment and trials in the UK.

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

I: My health is currently, well – I am N.E.D which means that at this precise moment in time (or at least at the point of my last scan which was 6 months ago) there is No Evidence of Disease.  This is fantastic and I am thankful every day that I have remained healthy.  However I know how unpredictable Melanoma is and how aggressive it can be.  My Melanoma could return at any time – anywhere inside my body – so I must remain in good health and I need to be vigilant.  I need to watch my skin for changes, I need to check my lymph nodes frequently and I need to know my body symptoms to know if I am unwell for anything more than a few days and it is unexplained. E.g. a pounding headache or pain in my stomach for no reason.  These could be signs of progression and I would need to act quickly & get back to the oncology team to get a scan and put a treatment plan in place quickly if need be.  The knowledge of the potential is daunting.

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

I: I like to spend time with my children and I run for health and for pleasure.  I took up a beginners running group after diagnosis purely for health but I enjoyed it so much I signed up for a 10k which I ran for the British Skin Foundations dedicated Skin Cancer & Melanoma charity It Takes Seven which I helped to launch in 2014.  I have continued to run sinceand find it a great release of tension. The only times I can’t run is when work commitments or surgeries get in the way!

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

I: Do your research.  Understand what Cancer or illness it is that you have, how it is treated, what new developments there are for treating it.  Also find out if you are being treated under the best hospital.  There are generally centres of excellence all over the country that specialize in particular cancers or diseases.  Travel might be prohibitive, but it is always worth investigating.  Where possible get treated by the best.  I am thankful that I was able to transfer my Melanoma care to the Oxford University hospitals which is 1 ½ hours away from me. They are a Cancer specialist centre and the Melanoma unit is one of the best in the country.  I know that if and when my Melanoma progresses I will be looked after by experts immediately and that as a result of this instant access to expertise, my odds of survival increase.  I frequently write about my trust in the team at Oxford on my blog and am honored that they are so happily involved with the upcoming Melanoma Patient Conference.  The medical professionals only want the best for all patients and they are just as keen as patients are to see standards improve across the whole of the UK.

Thank you for sharing your story with us, Imogen!

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

Interview With Cancer Survivor Jenn!

breast cancer survivor

Today we are continuing with one of our features, personal interviews!  You can read our past interviews here.  Today Cactus Cancer Society talks with cancer survivor, Jenn.  She is a two-time breast cancer survivor, talks to us about her book, parenting during a cancer diagnosis, and so much more!

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Cactus Cancer Society: When were you diagnosed and what is your diagnosis?

Jennifer: I found a lump in my breast in 2007 when I was 38. I assumed it was a cyst, it felt rubbery – not rock hard. I figured it would go away after I got my period – but it didn’t. I had gone for a mammogram 18 months prior (as a baseline and it was normal) so I called the imaging center at my husband’s urging (he didn’t like the way it felt at all) and they took me right away. After the mammo they sent me down for an ultrasound…and I began freaking out. No one would tell me anything – but they kept patting my shoulder. I knew it wasn’t going to be good news. A core needle biopsy came back inconclusive but two weeks later the surgical biopsy revealed invasive ductal breast cancer, stage IIA.

CCS: How did you feel when you were first diagnosed?

J: I was so deeply in denial. I really couldn’t wrap my head around it. I felt like I was telling a lie each time I told someone about my diagnosis. I thought breast cancer only ran in families or only happened to women over 40. I was clearly mistaken and I had a lot to learn. My surgeon told me that because the mass was contained and relatively small I would be a candidate for a lumpectomy. Fine by me – get it out, get it over with was my mindset. Once I saw an oncologist though he kept using the words aggressive and fast growing. Which made me nervous. I just wanted to get through treatment and get on with my life. I had no idea that my life would never be the same.

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

J: I had terrific support from my family and friends but none of them had any experience with breast cancer. I went online and the pages I was directed to were terrifying and filled with statistics I was not ready to know yet. I struggled to find books or support groups geared toward young women. Everything I found was aimed at older women and the advice was to look at this as a gift, slow down, retire, and enjoy the grandkids. What the WHAT??? I had little boys at the time (age 9 and 11). This wasn’t a gift, gifts make people happy, cancer makes people cry. And retire? I was just getting my career back on track after taking a few years off while my boys were babies. Nothing made sense to me. I wanted to know what treatment would really be like, because in my head getting chemo meant that once the drip started I would immediately begin throwing up and all my hair would fall out at once in the doctors office, (clearly I’ve watched too much Lifetime television).

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

J: I eventually found support at my local Cancer Support Community but typically I was the youngest of the bunch. There were only about three of us under 40 and in active treatment. There are so many wonderful resources that exist now that didn’t in 2007. Facebook groups and online support groups like Cure Diva and the LBBC both of whom also have a strong Facebook following.

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

J: Once we knew the stage and planned treatment we told them in very simple, honest terms that were age appropriate. I was diagnosed two days before my youngest son’s birthday so we waited until after his birthday to tell them both. They knew something was going on because I’d been home from work for over a week and we wanted to make sure they heard it directly from us rather than over hearing a conversation or voicemail message that would frighten them. We sat them down after dinner and explained that a few weeks prior mommy found something hard in her chest and when you feel something in your body that doesn’t feel right you go to the doctor to get it checked out. I told them that I went to the doctor and he ran tests and did a small operation and found out that I have breast cancer. I explained I was going to take medicine that might make me sick and tired and my hair might fall out but it would grow back in again. Very, very hard conversation to have, I felt like I stole their childhood away from them. They were amazing though, lots of hugs and kisses and support – even still to this day as young men!

CCS: What was your biggest parenting challenge during cancer treatment and into survivorship?

J: I lost my job during treatment so I used the opportunity to volunteer at their schools and participate as team mom for the sports they played. Yea, I was the bald mom at football practice and in art class but I used it as a teaching moment for all the kids. Some asked to see my head without my hat or scarf and I happily obliged. I wanted my kids to know that no matter what I’d still be their mom and I’d always be there for them. The toughest part though was when another child told one of mine that I was probably going to die. I had to do a lot of damage control, I certainly couldn’t predict the future but I couldn’t have my kids living in fear either. I always tell them (still to this day) I’m fine right now.

CCS: Any words of wisdom to other young adult cancer survivor moms (and dads) out there?

J: Break everything down into two categories; what you can control and what you cannot control. A cancer diagnosis makes you feel very out of control. You cannot control the treatment or the surgeries or how you will feel but there will still be things in your life that you can control so focus on that. It helps to feel empowered. Also, take it one day at a time. Rest when you need to, listen to your body, and take care of yourself first and foremost. You’re allowed to be selfish, you’ve earned it.

CCS: 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)?

J: I began writing the book I needed to read. As I said earlier I couldn’t find a book that I could relate to and I had also lost my job while I was in treatment. I began keeping notes and eventually thought if I recorded, honestly, what it was like for me to go through treatments as a young mom then maybe I could make a pamphlet to help others. Once I hit over 100 pages I realized that my pamphlet was going to be a book. Does This Outfit Make Me Look Bald? was published in 2012, at the same time as my 5th cancerversary. I also listened to music, watched movies and napped – a lot!

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

J: Interestingly enough, when I was promoting my book I had decided to have a prophylactic bilateral mastectomy. Since my initial diagnosis I had several false alarms (benign growths) and I also had a complication of severe radiation deformity, which was physically and emotionally painful, it had become too much to bear. During the MRI prior to the surgery they found a small cancerous lesion at my lumpectomy sight. It was not a recurrence but a brand new cancer with different properties than the first one, this can happen 20% of the time – I had no idea. I knew the drill at this point though. I booked a haircut and a bilateral mastectomy on the same day. Once I was home and on disability leave I began blogging to help me process what I had been through and to keep my friends updated, it was incredibly cathartic. Since I had become such an outspoken advocate for empowering young women with breast cancer I had made multiple media contacts that had promoted my book I ended up with several sites running my blogs too.

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

J: I’ve helped women that I’ve never met and that means the world to me. I have no idea why or how I got cancer once – never mind twice. I always felt that if I could make the road a bit smoother for someone else then all the stuff I went though makes sense. I needed to give back to others and help them through my own experience. I have a Facebook fan page for the book where I post current articles about research, blogs (my own and others that I like), and also a lot of humor – because I know that during my darkest days I still wanted to laugh. I needed to find some humor. Being sick is so damn scary and so serious that on the days I laughed I felt like I was taking a vacation from cancer. I’m also a National Cancer Survivor’s Day (NCSD) recommended speaker; which is pretty cool. I’m asked to give about 4 or 5 speeches a year – and I love knowing that those talks reach even more people than my book and blogs do.

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

J: I’m fine until a doctor tells me otherwise. My blood work gets checked every six months and I see my surgeons once a year. I still deal with mild PTSD but I have my coping tools so I know how to manage that. I’m both a 9 year and 3 year survivor.

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

J: I live near the beach so if the weather is nice – my toes are in the sand! I like to run a few times a week while listening to very loud music. I continue to write my blogs and I’m also working on a fictional novel. I also love going out to dinner with my husband and kids.

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

J: You’ll be amazed by your strength and you’ll have far more good days than bad so relish those. Breathe deep, relax, laugh and love in equal measure and cherish yourself first and foremost. Listen to your doctors and partner with them, be your own best advocate. And if you feel as if they are dismissive…fire them! You get to be the boss of cancer.

Thank you for sharing your story with us, Jenn!  Look forward to a few more pieces from Jenn soon!

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

Interview With Cancer Survivor Paula!

cancer survivor interview

Today we are continuing with one of our features, personal interviews!  You can read our past interviews here.  Today Lacuna Loft talks with a cancer survivor, Paula.  She discusses her illness, her emotional and physical health and well being, and so much more!

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

Paula: May 21 2015, I was 36.  I had noticed a dent in my left breast back in January.  I thought I was working out to hard but when it didn’t go away I decided to get it checked.  They found two tumor’s during the original ultrasound, Stage 3 Grade 3 Invasive Inductile carcinoma.  After my mastectomy they discovered 5 tumors and fully involved lymph nodes.  I was a large DD so the ultrasound didn’t see the other tumors.

LL: How did you feel when you were first diagnosed?

P:  I was scared.  There are days I still pray it’s a bad dream and I will eventually wake up.  But I was prepared, I knew something was up right from the ultrasound, plus my Mum has been through it.  My biggest fears in the beginning were losing my hair and the surgeries.  I was angry at myself for not getting it checked sooner.  I had put my job before my health.  I figured it was nothing.  I was too young, even my doctor was shocked.

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

P: We just told them straight.  They knew something was up.  I was worried about telling my kids, cause ultimately it increased their chances for the future of being diagnosed as well.  My son didn’t understand.  He thought I was like Terry Fox.  He was worried I was going to die.

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

P: Never stop asking questions, about your options, benefits.  Never stop living.  I kept going to the gym and the arena.  I wasn’t missing anything unless my doctors told me I needed to stay home, like post-op and such.

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

P: I turned to my family and social media.  I had no benefits.  I lost my job.  We have very few close friends.  I found fellow survivors through a local Moms group.  It surprised me the people I thought would be there for me weren’t and complete strangers bent over backward to help me.

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

P: There needs to be better benefits for Cancer patients who do not have employer benefits.  Without the fundraising we would be in a bad place right now, and stress on top of it all doesn’t help the healing process.

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)?

P: I go the gym.  I go to Cancer yoga.  I watch movies on my tablet.

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

P: Outsiders know very little about the process.  Some don’t know how to treat you, some treat you like you have a common cold, and a few doubt you, if you don’t look sick then you must not be.  Many people were inspired by my strength.  I never let Cancer stop me from living.

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

P: I have had a mastectomy with immediate reconstruction. I have finished Chemo (thank god).  I  just had my lymph nodes and ovaries removed right before Christmas, so now I heal for another few weeks, and then I have 35 radiation treatments to go.  Once that is complete we will make the right side match, and then hopefully be done. Now I am just praying for my hair to grow back.

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

P: I love to go to the gym and I spend 6-8 hour each week at the arena watching my kids play hockey and ringette.

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

P: You are stronger than you think.  Make sure you keep living, take help when offered, and ask for help when you need it.

The financial strain on a family is almost as bad as the illness itself.  It’s so hard to focus on your health when you’re worried about bills, food, etc.  I had to wait 5 months for disability from the government. It’s 1/3 of what I was making and we have 4 kids.  My husband had to use all of his vacation to be at the important appointments and take me to my surgeries. Everything he took off after July was unpaid. But he is my rock and I needed him with me.

This is my Youcaring link. We are still so far from our goal. I will likely be off work until late 2016 early 2017 so every little bit helps.

Please never put your job before your health.  It’s not worth it and it could cost you your life.

Thank you for sharing your story with us, Paula!  Paula would like you all to know that she is more than happy to answer any questions that you all might have about chemo, surgeries, reconstruction, etc.!

Are you a cancer survivor, caregiver, or do you have a long term illness?  Interested in being interviewed by Lacuna Loft?  Let us know!  We’d love to hear from you!

Interview With Cancer Survivor Erin!

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Here at Lacuna Loft, we are always looking for new ways to add great, informative content that is relevant to your life!  (If you have more ideas, we’d love to hear them!  Email info(at)lacunaloft(dot)com)  Today we are introducing a new feature, personal interviews!  Are you a cancer survivor, caregiver, or do you have a long term illness?  Interested in being interviewed by Lacuna Loft?  Let us know!  We’d love to hear from you!

Today Mallory, LL’s founder, talks with a cancer survivor, Erin.  She discusses her illness, her emotional and physical health and well being, and so much more!

Mallory: When were you diagnosed?

Erin: In late July of 2008 my boyfriend at the time (now ex) told me one day that I felt “swollen” the last time we had had sex. I kept thinking he meant that I felt swollen as in having a yeast infection – which I knew I didn’t have – so I let it go and told him he was nuts. In the shower that evening, I decided to check myself. To my horror, I felt a golf ball sized hard mass inside me. I made an emergency trip to the gyno the next morning where I was informed that it was most likely a Bartholin’s Cyst (being common for women to get clogged Bartholin Glands) and put on medication to shrink it. A month later, I was checked again and the mass had gotten larger. I was told I could let it go and live with it since it wasn’t painful or I could have the cyst drained. Luckily, I decided I didn’t want something that large in my body and scheduled to have the cyst drained at a local hospital in August of 2008. A 15 minute procedure turned into a 2 hour tumor extraction of a mass a little smaller then a baseball. Again, I was informed that this was most likely a benign tumor since it was completely circular in appearance and was literally just “scooped” out. After two weeks of waiting and two hospitals Pathology teams later, on September 8th, 2008 I was informed I had a rare Cancer – Vaginal Leiomyosarcoma.

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

E: I was 23. I was sitting on the couch watching TV with my father and the house phone rang. He didn’t say much but upon hanging up, immediately went outside. I really didn’t think anything of it but when he came back in the house his face was red and he was carrying a paper towel. I remember wondering where he had gotten the paper towel since he was outside. Less than 10 minutes later, my mother arrived (my parents are divorced) unannounced. I already knew this wasn’t good but never expected her to tell me they had found Cancer cells. I don’t remember anything from the conversation other than that. I cried.  I locked myself in the bathroom and sat on the floor crying as I called my best friends and my boyfriend. My girlfriends cried with me and my boyfriend asked if I was kidding. I felt as though I was hit by a train.

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

E: My mom stayed at the house for a while after the news was broke and a few of my closest friends came over that night just to hang out as did my boyfriend. The only people I ever knew to have Cancer had died many years prior to this occurrence so I felt lost. In the weeks that followed I went online to look up my disease but it was probably the worst thing I could have done. Every single thing I read told me I was going to die. Probably a year or so after I was diagnosed, I came across the American Cancer Society and their annual Relay For Life fundraisers. I found one in my area and decided to be a chairperson. This helped immensely because I felt as though I was making a difference. I also got to meet other survivors – one in particular who was extremely supportive and whom I’m still friends with today. The only woman I was able to find online who had Vaginal Leiomyosarcoma emailed with me a few times and that helped as well. Other than that, my mother and father have been amazingly supportive – even during times that I completely pushed them away. My friends are the best ones I could ask for and my ex-boyfriend helped me through those first few years with an incredible amount of strength. I now live with my current boyfriend who is there whenever I need a shoulder to cry on or an ear to listen.

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

E: I still to this day have never met anyone with my disease that is/was my age. I think it would’ve helped me tremendously if I could have been put in touch with or found someone that went through or was going through what I did – at the age I went through it. Of course there have been others with Leiomyosarcoma – but having it vaginally is extremely rare. The woman I found online was in her late 30’s when she was diagnosed. Although that is absolutely not “old”, it is still a completely different stage of one’s life then being 23. I still felt like a child at that age. I didn’t know what I was going to have to be subjected to that I would’ve liked to have heard from someone who was sharing my grief and misery. The countless physical exams, needles, tests, humility, pain and emotional trauma would’ve been a little easier to bear had I had someone to share it with – who was going through the same thing.

M: 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)?

E: I always had guilty pleasure reading material (gossip magazines, books that didn’t require a lot of concentration, etc.). I ALWAYS had my ipod with my fav music so that I could escape into my own world. In fact, during my 1st lung surgery I was soo upset and nervous about the epidural (I have a phobia of needles…) that they gave me a bunch of meds prior to the surgery so I really have no recollection of what happened. But I have photo evidence as well as my parents letting me know that I apparently refused to go into surgery without my ipod because I wanted music to help me relax. Well, if you look at the pictures, my ipod wasn’t even on lol. I was so out of it that I thought I was listening to something when I wasn’t. I also like to take both happy and unhappy pictures of my journey. This is not only for my blog but also to help remind me after it’s over, I survived and everything worked out well. Aside from taking new photos, I like to have existing ones of my friends, boyfriend, dogs, etc that remind me of fun and happy times in order to take my mind off what is happening that moment.  I have also painted my nails while in the hospital and had friends come entertain me, haha.

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

E: After about 2 and ½ years with the disease and two vaginal surgeries later, my tests kept coming back clear. I was put on a 6 month schedule instead of every 3 months and was starting to see a glimmer of hope that this may have just been a fluke thing and would never happen again. Then I received a call from my doctor one day after getting scanned stating that he would like me to see a lung doctor they had at the hospital (I was then at Memorial Sloan-Kettering Cancer Center in NY). I knew this was not a good sign. Long story short, I was told my Cancer was back and now in my left lung. Due to the location of the tumor, I was told until I was cut open on the operating table, they would not know how much of my lung would need to be removed. I ran the risk of losing half or more of it – which as a singer, was the worst news I possibly could have imagined. I was scheduled for surgery the end of June and lived in fear and constant worry until then. Because writing has always been an outlet and stress relief for me and since I’ve never been one to keep my mouth shut, I decided to start a blog to outline what I was going through. It would not only be therapeutic for me, but perhaps someone going through what I was would find it and take comfort in knowing they weren’t alone. I have been keeping my blog (www.shouldishaveit.blogspot.com) since June of 2011.

M: Have you had any complete strangers reach out to you after finding your blog?

E: I like to keep track of the pageviews and have had many people from all over the world contact me in regards to my journey with this disease. Some have just offered me words of encouragement but others have written that they appreciated my honesty and candor and that I had helped them – if only to give them a chuckle in a dark time. There is no greater reward then this for me.

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

E: If I could have found someone so open and blunt while documenting what they were going through, perhaps I wouldn’t have felt so alone. Yes, the people in my life have been nothing but truly amazing and supportive (and I honestly mean it when I say I have the most incredible parents and friends) but they are not me and aren’t inside my head on good days and bad. They don’t know what it’s really like to be told time and time again that the Cancer is back, suffer through 8 surgeries, feel as though your life is a revolving door of pain and recovery and basically live from one set of tests to the next. I have had some extremely dark times where having someone who’s been there or is still there tell me it’s going to suck, but be alright, would have helped. It’s definitely different hearing it come from someone whose actually had to endure the same crap you have then just a supportive person in your life keep telling you to be positive and keep going.

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

E: A few years ago I was informed through some tests that my Cancer is estrogen based. I was put on injections and daily medication to remove the estrogen from my body. This has kept the tumors in both of my lungs at bay but since being diagnosed, I have unfortunately had this ugly disease pop up many more times than I would have imagined. Since being on the injections and medication, I have been in a perpetual state of menopause – and will be until the meds stop working and I am taken off. This means I have the physical side effects of menopause and the mental side effects. I am currently 29, and was 27 when I started this regimen. The most traumatic thing out of all the side effects is that I will never be able to have children. Ironically enough, when I was younger I never used to want them. Of course now that I’ve been told I never can, I want this more than anything. I think this weighs more heavily on my mind then having the disease itself. My emotional state has been almost unmanageable at times and I have been working hard to relax my mind as much as possible. On top of going through the daily torments of the disease, being in menopause also makes me crazier than I ever wanted to be! I receive my injections every 4 months as well as CT/PET scans of my entire body. To date, I have had 8 surgeries (including 3 vaginal, 2 lung, 1 calf, 1 butt cheek and 1 pelvic), gone through a clinical trial and have had 7 weeks of radiation – aside from countless needles, tests, exams and physical/emotional horror.

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

E: There are going to be some extremely crappy times – beyond what you ever could have imagined. BUT, you will soon learn how much stronger you are then you ever dreamed you could be. I am coming up on my 6 year “anniversary” with Cancer and have been through way more than I ever thought I could handle – but I’m still here. I’m still fighting and will never give up (even though there have been times I definitely wanted to). Surround yourself with supportive people and don’t be afraid to talk about what you are feeling. If you’re sad, cry. If you’re angry, yell. If you’re happy, laugh. Disease brings a rollercoaster of emotions along with it but bottling it up and trying to keep a smile on your face all the time even when you feel like your world is crumbling around you will help everyone else but you. Put yourself first and take everything one day at a time. That is my greatest struggle and one I am trying to work on as much as I can. Don’t worry too much about the future and what will happen next week, next month, next year – focus on the now and today. 

 

Thank you so much for sharing Erin!  If you are interested in reading more about Erin, or learning more about her story, you can find her personal blog here.