My Friend Emily R.

I met Emily through the Kick Ass Cancer Mamas Facebook group.  Here is her story…
Tell us your story / stats: 
I was diagnosed at age 32 and turned 33, 3 days later. Stage IIIa, 25 weeks pregnant. I had a lump for many years that was called a cyst. It would come and go with periods. When I was pregnant it got very hard and never went away. Then I small red streak appeared at the top of my breast. After trying some antibiotics for a clogged milk duct, I did the real tests to find out it was cancer.
C aside, tell us about yourself. What makes you, YOU!
I’m sarcastic, sometimes funny, I love fitness, I love the beach, I’m a PE teacher, wife and mother. I love dogs, hikes, acupuncture, yoga and to be around friends and family.
What went through your head when you were first diagnosed?
Honestly, just shock and fear, I think I cried every day for about two weeks. I saw death. But thank god, that hasn’t been the outcome for me, yet.
What are some of your personal coping skills during difficult times?
I write sometimes, I complain to my friends on Facebook, I go to acupuncture, I go to the gym.
Tell us about your support system. Or lack of. Where do you get your support from?
My husband is my rock, but I’m not big on verbalizing things until they are really bad. I could probably do better on that end. I wish my friends would reach out more and make more of an effort to spend time with me.
Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?
I didn’t have too many weird situations when this came up, mostly people just asked if the baby was ok.
What have you learned about yourself since dx?
I cannot handle stress. Lol. I have learned that I’m not impervious to suffering and illness.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
It’s not always a death sentence. But I wish people would support each other more. I had some great visits and people brought things to help us, but on the other hand you have close friends who never visited or anything. Just don’t get weird, be there!
Thoughts on the pink… 
I mean, I don’t feel a certain way, except it’s a club that I belong to. Not one that I want to belong to. I don’t wear pink every day, but my little pink ribbon tattoo reminds me of the shit I went through and what I was capable of. It’s not about who my money goes to.
Where are you at in life now?  Mentally, physically, emotionally…
At this exact moment I feel like crap. I stopped my meds that put me into menopause in hopes of having another baby. My hormones are so all over the place, I’ve been fighting this anxiety and panic attack feeling for about a week. But all together for a month on and off. When I feel good, I feel strong and healthy, but today I feel low and broken.
Do you have any lasting side effects- mental, physical, etc.?
I might. I’m still trying to see if my anxiety is from me or just the out of whack hormones. I may need to pursue some counseling in the future if this doesn’t improve.
Have you noticed any lasting effects on your families and friends?
I feel like sometimes that they have already forgotten. In some ways I never want to talk about it again, but other times I want to vent!
If you could send a message to yourself from 10 years ago… how would that go?
Change your diet, open your mind, push the doctors to do what you think, listen to your body.
What are you passionate about? Is this different than what you were passionate about before dx?
I’m more passionate about my personal relationships with people. I’m not good at them all the time but I’m trying.
Do you have any short term or long term goals that you are actively working towards?
I applied to a masters program, I’m hoping to be accepted into the next term! I want to teach at a community college.
Do you have a favorite quote, mantra, phrase, or curse word?
If I die today, it was the best day of my life. To me it just means, live today happy, make today the best day of your life, so if you died today, you died happy!
Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?
I hope they remember the good things about me. I hope they learn from me too.
Would you like to share one of your shittiest moments/memories? The raw side of C.
It’s crazy how much of a blur that 6 months was. I tried to get pregnant for so many years and cancer just robbed my happiness. It took the one joy in my life and made it totally different. Being pregnant and going through cancer treatment is just so weird and fucked up.
What’s the latest happenings in your life now?
I feel like I’m fully back into “normal” life. Work, wife, mommy…doing everything I did before. I feel very happy with where I am, now I keep wishing for more and more, like there’s a big future still ahead of me.
If people take away anything from your story, it would be…
You can come out of this crappy situation and find one thing to “learn” from it, you learn what you truly value. It will be ok, but have good supports set up, take care of yourself too, that’s important and be a nice person!

My Friend Jennifer

 

I met Jennifer while working at LifeCare Solutions in San Diego.  Here is her story…

Tell us your story / stats:
I was DX 6 days after my 35th birthday and just having my 3rd child who was 3 months old. At the time, I had my older daughter Leilani who was 7, my son Luke who was 5 and my 3 month old Larissa. I was breastfeeding and thought it was a clogged milk duct. When my lump grew from the size of a quarter to a golf ball in one week, I knew something was not right. I went back to my OBGYN and he sent me in right away to get a biopsy done.  I got the call 3 days later that is was breast cancer. I was a triple negative and was at stage 3. I met my surgeon and met with my oncologist and 2 weeks later I had a double mastectomy. My doctors were very fast and just within that time, my mass grew to the size of a softball and consumed my whole right breast. I was told I could have a 50/50 chance of getting it in the other side. With just having a new baby and 2 toddlers, I was going to do what ever it took. I went through 6 rounds of chemo and 8 weeks of radiation. For the next two years, I went through 8 different surgeries, a partial hysterectomy and reconstructions of my breast. I had a purpose, to fight for my husband and kids. I wanted to see my kids grow and not miss out on anything. For my new baby to know her mom. I am happy to say I will be 10 years cancer free this year. My oldest started college, my son is a JR in high school and my baby Larissa is in 5th grade and knows her mommy. My husband and I will be celebrating 19 years of marriage. I am so thankful for every day.
C aside, tell us about yourself. What makes you, YOU!
I feel I am a good person and I love my family and friends.
What went through your head when you were first diagnosed?
How was I going to sit down and tell my kids and husband. That was one of the hardest things, when my kids asked if I was going to die. What was my husband going to do?  Would he stay or leave me? We were so young and I was just so scared.
What are some of your personal coping skills during difficult times?
My shower was my safe zone for crying and just having my own pity party. Then when I would get out and I would put my strong face on again for my family.
Tell us about your support system. Or lack of. 
I was so very lucky to have a huge support system. My husband and even my older two kids really stepped up so much to help me when I needed anything. My parents, sister, brother, nieces, nephews, aunts, uncles, in-laws, sister in laws, brother in laws and my friends. The week I would have my chemo, Larissa was shared by so many friends and family so I could rest and Che could go to work. We were truly blessed with the support, even from co-workers at my work and my husband’s work. It was truly amazing. I still get choked up about it.
What have you learned about yourself since dx?
That I am stronger than I thought.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
That even though you might have won the battle, you will never be the same person again. It does change you and your body forever. I think that was a big thing for me. I would get told that a lot.
Thoughts on the pink… 
I did the Susan G Komen 3 day and have donated to that cause and to American Cancer society because I have lost many friends and family to other cancers. I wear my pink with pride and there is something about the bond you have with other survivors.
Where are you at in life now? Mentally, physically, emotionally…
I am at a wonderful place. I have been here for many milestones that I was so afraid I would miss.
Do you have any lasting side effects- mental, physical, etc.?
I have some of both mental and physical but I just push through it.
Have you noticed any lasting effects on your families and friends?
There are but my family and friends know that life is hard and after what they went through on this journey with me, they don’t complain much. Lol
If you could send a message to yourself from 10 years ago… how would that go?
That you will be ok and you will be challenged but are a strong lady.
What are you passionate about? Is this different than what you were passionate about before dx?
I have always been passionate about being present with my kids and husband. I want my kids to know they can always count on me. I feel that way to all the people close to me in my life.
Do you have a favorite quote, mantra, phrase, or curse word?
Life is one day at a time.
Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?
That I loved everyone and I loved to have fun. I was a good person and to drink a beer. I always told them no crying, just celebrate and pour one for the homie..lol
Would you like to share one of your shittiest moments/memories? The raw side of C.
I had three that I will never forget. My first one was after I came home from my double Mastectomy and it was 2-3 days after, when it was time to change my bandage. I was so scared to see it, so my husband Che and I decided we would lock our bedroom door and him and I would do it together. When that bandage came off we both cried together.
My second was right after my first chemo treatment. Your hair falls out pretty fast and so again I told Che “ok, get the older kids and your clippers and let’s shave my head.”
My third one was I wanted to stop my chemo treatments about my 3rd one in. I was getting sicker and weaker after each one and I could see my husband was just so worried. He had stayed home one day and we had this long talk because I was not sure what he was thinking or feeling. I think people forget and, even us that are going through this tuff time, that your spouse is feeling and going through it with you. Then he opened up about how he felt helpless because he wanted to fix me and have me better.
What’s the latest happenings in your life now? 
Life is good and busy with my family. I feel very blessed.
If people take away anything from your story, it would be…
To never give up. We are stronger than we might think.

My Friend Karina- “Carpe Fuckdom”

A few days ago, I shared my friend Karina’s interview. Early this morning, she passed away from metastatic breast cancer.

Heartbroken doesn’t even begin to describe how we are left. Karina was a loving mother and wife, a true friend, so intelligent and passionate. She leaves behind the love of her life Taylor, her beautiful daughter Evy and countless family and friends.

I first ‘met’ Karina via the Kick Ass Cancer Mamas Facebook group but got to hug her tight in real life when we made the trip out to Vegas about a year ago for a KACM Meetup. She was part of the group of gals who I wrote about back then, one of the people who took a piece of my heart with them when we all left for home. She still carries that piece and has taken it with her to the great beyond- where she will be greeted with love by those mamas who have passed before her. I know that we are all better people to have known her and have no doubt that her legacy will live on.

To honor my friend, I am sharing her story once again. She will forever be loved and will live on through all of the people she has touched throughout her too short life.

Karina, thank you for loving us.

Tell us your story / stats: 

31, Stage 2A now metastasized one year post dx, married and 5-6 weeks pregnant with our first child. I found my lump during a movie after feeling a dull pain in my right breast. We did an ultrasound and biopsy to dx that it was IDC grade 3.

C aside, tell us about yourself. What makes you, YOU!

I used to be very outgoing and social. Since my cancer has metastasized, it’s been hard to keep this up because I cannot leave my bed much these days without severe bone pain. But I love my loved ones and I hate to see them hurting because of my dx. It’s gut wrenching. My world lives under my roof – my amazing, supportive husband Taylor and my fearless warrior baby Evelyn. My baby girl is 20 months and the best medicine on the market! If I’m down, she lifts me back up within minutes!! My support system has helped to keep me afloat and I hope in years’ past, I did the same for that at some point.

What went through your head when you were first diagnosed?

I was so scared that we wouldn’t be able to keep the baby. We had been wanting to have a baby for a long time and it took us 6M+ to finally conceive. We had a positive pregnancy test 10 days prior to my dx. Over those 10 days, we became VERY ATTACHED to our “Nugget.” My first surgeon was not very knowledgeable on BC treatment during pregnancy so we set up a 2nd opinion at Moffitt, whom handled most pregnancy cases in SE region. Until that appointment over a week later, there was so much fear and uncertainty on her future. I think in my head, I naively thought that I was “safe” as long as I followed the treatment regimen because it was caught early stage; therefore, all I did was worry about my baby that first week. Fortunately Moffitt assured us that we could safely treat and have a healthy baby. Unfortunately, I was very wrong about my own safety.

What are some of your personal coping skills during difficult times?

I try not to wallow. Upsetting thoughts are going to creep in, it’s just going to happen. So when it does, I give that thought the respect it deserves and have a good cry for 5 minutes. After that, I move on. I can’t live my life and enjoy the good days if im constantly depressed and stressed. It’s just not possible. But I choose to not allow my fears to overcome me and ruin my life that I have left. I will NEVER tell another person suffering through BC to “just stay positive” because that just trivializes a very serious and scary disease. But I will tell them that stress does nothing to help them; in fact it will lower their immune system. Depression and fear and wallowing can be debilitating, so don’t let it overcome your life and rob you of any happy days. Because then what’s the point of living???

Tell us about your support system. Or lack of. Where do you get your support from?

My support comes from family, friends, and even acquaintances. It’s been a true eye opener of how beautiful humanity truly is!!! I think this is one of Cancer’s “gifts;” prior to cancer, I was depressed watching the news, watching people be selfish and vain, and seeing others have no regard for other people unless they had a personal relationship (even then, it could be questionable!). Post-Cancer, I have received more offers to help than I could probably handle. Friends that I hadn’t seen or really spoke to from college (13 yrs ago) or that I worked with (10 yrs ago) came out of the woodwork to come help me. It could be rides and company to chemo (all day event!), offers to make lifestyle video of our family for memories, driving 4 hrs and staying the weekend for a trial I joined… offers for massage and visits. And these are just from the friends I hadn’t seen in ages!! I couldn’t possibly summarize all of the insanely generous things my close friends and family have done. Even some strangers have reached out during my outings. My heart has been warmed and my faith restored in humanity. I do not go without love and care. Then there is my superhuman husband who LITERALLY does everything for our household (baby rearing, house repairs, cleaning, shopping, etc) along with working full-time AND taking care of a broken wife. And guess what? He never complains. He very rarely gets frustrated. He only gets mad if he thinks I’m overexerting myself. I haven’t contributed anything in over 6M+. And while some may say “as it should be” quite naively, it is not what I’m seeing on my support groups. Many of the women I interact with don’t feel loved and supported as they once did. And it’s very sad, but being a caregiver is extremely hard. It’s taxing. It’s stressful. It can be thankless. You get no breaks. Not everyone has the fortitude to handle it!! It’s a sad truth because it is our darkest hour and the time when we need the support the most!

Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?

It was a VERY hard decision to do chemo while pregnant. My oncologist told me after my lumpectomy that I was “cancer-free.” If that is true, why did I need the chemo now? Could I wait 8.5 months to start chemo? I consulted with Dr. Cardonick, who is a research MFM OB that tracks women and babies throughout pregnancy (and life) if they’ve received treatment during pregnancy. She’s been tracking for over 10 years and looks for trends to ensure safety of drugs, surgeries, etc. She gave me a resounding NO! I could not wait. While the cancer cells that had grown and formed a tumor have been removed, all of the microscopic cancer cells that could be remaining would not be detected in any ultrasound; and since I was pregnant, I couldn’t receive any scans either… not that that would matter because those also have limitations on cell detection.

I did some additional research, consulted my online cancer mamas group and decided that it was just as important to save my own life as it is to save my developing baby. I wanted to do everything in my power to lesson the risk of leaving her motherless.

What have you learned about yourself since dx?

I find myself yearning for more experiences and memories than I am for things. I wasn’t SUPER materialistic prior, but I definitely enjoyed buying things. Money spent on things I don’t need leaves less money for family vacations, lunches with friends, walking around a beautiful garden. Those moments will exist forever but that dress you bought that you might wear once? It’s going to be given away when you’re gone. It’s not important.

What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.

That mammograms save lives because of early detection. First of all, mammograms are TERRIBLE for dense tissue breasts. If you have dense tissue, please also demand an ultrasound. Second, the science shows that no matter how early cancer is detected, it can still metastasize… even at Stage 0 ( I have seen a few cases in my metastatic group ). This isn’t meant to scare anyone; it is meant to educate and ensure that society is taking this disease seriously. Because the only time breast cancer kills is when it spreads (metastasizes) to something (organ/bone) outside of the breast. Awareness is not sufficient. It says “be aware, touch your tatas! Catch it early and you’ll live!” This sends most BC funds to awareness campaigns that funnel a lot of their donations to CEO paychecks and awareness events. That’s unacceptable! Knowing that 30% of early stage patients will progress should light a fire under everyone’s butts to raise funding FOR RESEARCH! We need a cure, not a pink ribbon. It’s serious everyone, it’s really serious. Donate to Metavivor.org if you want to make a true difference and steer clear of pink campaigns which give pennies to actual charities.

Another eye opener that I’ve learned is that someone who was once Stage 2 (me!) is always considered Stage 2 even when cancer kills me. But my passing will never be counted in the statistics that reflect Stage IV deaths. This is due to semantics; I’m considered Stage IV now unofficially but for statistics I’m considered Stage 2A metastatic. What does this mean? It makes it look like less people are dying from metastatic breast cancer than there truly are. It’s deceiving.

Thoughts on the pink… 

I do not support Pink Campaigns (see above). When you buy a bracelet that is pink touting proceeds go to Breast Cancer… you’re really donating maybe pennies to a charity. Many do not even provide details on packaging (proceeds % or charity affiliation). When you donate to Komen direct, a LARGE chunk of their annual funds go to executive salaries. They also throw events to bring awareness or raise funds that actually cost money to host. And for what? Awareness? Do you know anyone that doesn’t know what BC is anymore or whether they needed to get mammograms and do self checks? I think we are past awareness and need to move on to the uncomfortable conversations about metastatic BC because if we cure that, we cure early stage BC.

Metavivor.org puts 100% of proceeds into research. I like those numbers!!!!!

Where are you at in life now?  Mentally, physically, emotionally…

Since my MBC diagnosis, things have changed. Mentally I am doing ok actually. There are some days worse than others, but overall I keep myself above water.

Physically I have deteriorated significantly. Mostly I deal with severe bone pain. It forces me to stay in bed most of the day which is hard when you have a toddler that looks to you to play and a husband who just wants to go on a date with his wife. I can’t help raise my baby and that hurts.

One thing I used to naively say and that I hear often is “if I had terminal cancer, I wouldn’t want to do that awful treatment and make myself sick and in pain and put my family through that burden.”
Well until you’re facing your baby at 33 years old trying to get past a goal line where she will actually remember you… and until you feel the EXCRUCIATING pain from liver and bone (and insert organ here) metastasis which only opioids, CHEMO OR RADIATION treatment can touch, you might think twice. Yes, side effects suck, but so does intense and debilitating pain. Just try to remember that it’s never a black or white decision. You won’t know what you’ll do in this situation so perhaps keep that opinion to yourself because expressing it can be hurtful to someone actually living it.

Do you have any short term or long term goals that you are actively working towards?

I’m working towards building a legacy for my daughter to remember me by. I write her letters, set up photo shoots, make videos, etc. I suggest this even for the healthiest of parents. It’s neat for your child to receive these things as they grow and learn more about mom and/or dad .

Do you have a favorite quote, mantra, phrase, or curse word?

“Their story is not my story.” (No matter how close your dx is to another patient and how similar your treatment path is, your bodies are SO COMPLETELY different. You will never see them play out the exact same, so don’t make comparisons.)

“Fuck.” (Because cursing is cathartic! It’s been scientifically proven that cursing when in pain helps to minimize pain response. PLUS, who doesn’t love a little cursing? If you can get away with it at any point in life, it’s now! Carpe Fuckdom!!!)

Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?

How much I loved and appreciated them.

Would you like to share one of your shittiest moments/memories? The raw side of C.

Having diarrhea 12X in one day cannot be glamorous. If you have a SO, don’t bother trying to hide the hideousness that is your side effects. They want to help, let them! My husband has done research on how to cure painful hemorrhoids, buying laxative suppositories, etc. it’s not sexy but it’s love.

If people take away anything from your story, it would be…

Honesty about your dx and it’s difficulties can be a gift to society. I try to share what’s going on via my FB so that I keep everyone updated and I am providing awareness of the ugly side of BC that is completely invisible to the general population. Though it was never my intention, I’ve been told that it’s inspirational and have been thanked for broadening their knowledge. If I educate 10 people and they educate 5, I’ve lived a successful life, haven’t I?