I met Kathleen through the Kick Ass Cancer Mamas Facebook group. Here is her story…
I met Karina through the Kick Ass Cancer Mamas Facebook group. Here is her story…
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?