This month's #OurStories is written by Marni Sanders, and illustrates the strength of a mother's love for her munchkins and the benefits of a dark sense of humor...
March 2009 was one of the best weeks of my life.
After struggling for years to get pregnant, we finally hit the IVF jackpot and were on our way to having twins by the end of the year.
During a routine ultrasound with my OBGYN, he noticed a small white spot on my daughter’s heart. This was right before Thanksgiving and I was 34 weeks pregnant. The OB said I needed to see a perinatologist (high-risk pregnancy doctor) right away. I was scheduled for the very next day.
After the perinatologist examined me, he said that it was highly likely that my daughter had this disease called TSC (Tuberous Sclerosis Complex) which is rare multisystem genetic disease that causes non-malignant tumors (referred to as “tubers”, as in the name) to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs, and skin.
He also informed me that TSC is one of the diseases that you could legally terminate the baby, even at this late stage in the pregnancy.
Needless to say, I was in shock and needed to get much more information before making any decisions.
From the very beginning of the pregnancy, my plan was to love and cherish these babies no matter how they came out and this news didn’t change my mind.
My OBGYN could not understand our decision and completely badgered me with his opinions, such as that having a sick sister would be a drag on our son’s life too, which was not helpful at all. We would have left this doctor behind,even if the high-risk pregnancy hadn’t required us to move on to a specialistAs her condition could require immediate surgery in the neonatal cardiology unit at Children’s Hospital, and the don’t do deliveries there, we were set up with an OB at Hollywood Presbyterian Hospital right across the street.
Luckily, she exhibited no problems at birth, and only stayed on the Cardiac NICU for a few days. Her heart was closely followed until she was five, when her cardiologist said she was out of the woods.
Further test confirmed the diagnosis of TSC, due to light spots on her skin and a tumor in the left parietal lobe of her brain. We also found out that she had PKD (Polycystic Kidney Disease) which happens in 1% of the cases of TSC, through a mutation on a neighboring gene. Lucky us! Two diseases for the price of one.
Without even seeing her, she diagnosed it immediately. She was having complex partial seizures. Since we had a medical team in place, it was easy getting her on medication quickly. Over the course of two years trying several medicines, we landed on one that has kept her a seizure-free for 6 years, which is pretty fortunate.
When the twins were born, I decided I was going to enjoy every possible moment with them because I knew things could get worse at any time.
Turned out that we were very lucky that she’s a mild-moderate case but that doesn’t stop the worryingMore and more treatments are coming out for this horrendous disease but there still is no cure, so we keep hoping she stays stable for as long as possible. Once we passed the 3year mark and knew she wasn’t autistic, I could really breathe a sigh of relief.
I had read once about a girl with mild TSC who died after having a gran mal seizure while out jogging. She hadn’t had any seizures for years and was very bright and athletic. Just awful! I can’t imagine what those parents must have gone through, but it made me more aware of how precious life is and that we really do need to focus on today and enjoying the little moments that we get with these kids.
My brother and mother came with me to the infusion center, and as we were driving home, I told them I felt like Chemo Sabi! We all had a good laugh and it eased the whole experience for me and them. I felt like my doctors were good and that I would have a horrendous year but then it would be gone and I could move on with my life.
As our kids are already medically savvy as a result of IVF and TSC conversations, my husband and I decided to be straightforward with them after getting some advice from friends who had been through the same thing. We told them all about the cancer and what the doctors were going to do to help Mommy. The twins were 5 at that time and it was very upsetting but they seemed to take it in stride. In fact, they got so used to me throwing up that it didn’t even phase them. On Halloween, I was really sick, couldn’t even make it to the bathroom. So, I’m throwing up in a trash can by my bed and my son walks up to me and says, “Can you tie this belt for my sword on me?” Mid-spew I say, “Um, can you go ask Daddy? I’m a little preoccupied right now.” I’ll never forget that. It was their new normal and they adjusted really well.
At the completion of a rough year of treatment, I figured I was done with cancer. I still had follow up appointments and I knew that if you make it to the 5year mark, the chance of it coming back was much lower.
Since my cancer is hormone positive (growing with exposure to estrogen), they put me on anti-hormonal medications like tamoxifen and others that I didn’t tolerate well. Chemo sent me into early menopause along with major hot flashes. My oncologist had me get a shot of Lupron every month to make sure I stayed in menopause. She suggested 5 years of that! My poor tush didn’t like those shots so I asked if they could remove my one remaining ovary (another long and fraught story) so I wouldn’t have to do the shot every month. I had that done along with my 2nd breast reconstruction surgery. The day before my birthday in 2016, the OBGYN who took out the ovary called to inform me that they found cancer cells in my ovary. There were no indications that it spread more than that, but now this meant the cancer was out in the bloodstream and capable of spreading to other organs, which is called Stage 4, or metastatic. Ironically, my oncologist put me on another regimen which included getting two shots in the tush every monthIf I hadn’t requested the removal of my ovary, we probably wouldn’t know about it spreading until it became too late.
I had horrendous migraines and extreme fatigue and nausea. We spent months trying to figure out how to get rid of my migraines which also feed off my estrogen levels. It wasn’t until I landed at a neurologist’s office that I was told that taking out my ovary was the cause of my chronic migraines. I have no idea why doctors don’t know these things from the get go but they were so concerned with the cancer and thinking about the possible side effects. Now I’m taking a bunch of medication for the migraines and getting botox shots every three months and they’re finally under control. A few more pills are helping with energy and brain fog. Small miracles.
The twins had a really hard time seeing me so sick over the last year. My daughter says that she hates my doctors because all they do is give me medicine that makes me sick. How do you explain side effects to a 7 year old? All I could say was that they are good doctors and they are trying to find the right combo for me.
One day, she was feeling really down about her illnesses and she was telling me how unfair it is that she has to take medication (for seizure control and to lower blood pressure on her kidney) and go to the hospital a lot. I told her that it definitely isn’t fair that she’s sick and there are people out there who don’t have her problems but they also don’t have all of her talents. That they aren’t as smart, funny and artistic as she is. Slowly, she began to smile. I knew I was on the right track so I continued with saying that they can’t climb like a monkey, that they aren’t awesome at karate, that they don’t understand puns and witty humor, like she does. Again, the smile grew and she started adding her own things. Whew! Sometimes you nail parenting moments like this and sometimes you don’t. I’m sure that I’m not done with this problem for good but at least it calmed her down this time.
Through infertility, genetic catastrophe, and cancer, I’ve never asked “Why me?”. My mind goes straight to “Why not me?”. It can (and does) happen to anyone. It’s not something I did wrong or my daughter did wrong. Bad things happen to people all the time. I find myself looking at people who are far worse off than me, which helps put everything in perspective. Like the woman who lost a leg in the Boston Marathon bombing. There was an iconic picture of her being carried away by a fireman and I couldn’t imagine going to do a marathon and then losing a leg. Later, I read how she made it through physical therapy and was doing well until she took a trip to Europe and died in a random car accident. If that doesn’t give you perspective, nothing will.
So, I keep hanging in there hoping that I will see these wonderful children grow up. Enjoying seeing them discover new things and introducing them to some of my favorite things. They are what keeps me going everyday, along with my husband who has been my rock throughout all of this. It’s not fair to him either but he doesn’t complain. We are all fighters in this family and we will continue to fight these obstacles the best way we know how. For me that usually means making jokes or finding the bright side in each and every obstacle. Whether that’s finding a free parking spot in Santa Monica when I have to go get a scan, or discovering how fast I can shower with no hair and having nothing to shave. Or realizing that I saved a butt load of money not needing haircuts and not needing hair products. There always is some silly bright side if you look hard enough. Even the mastectomy had a bright side! I got a free tummy tuck and boob lift!
Would you like to share your story with #OurTribe? Send submissions to email@example.com
People mean well, but they can say the STUPIDEST things about your breast cancer diagnosis. If you're lucky, their stupidity may tickle your funny bone and at least give you a giggle. However at a time when you are feeling vulnerable, it's not uncommon to feel intense disappointment, hurt and anger at the insensitive things people you expect more from say to you. Excuse my "Sally Sunshining" for a moment, but these insensitive comments may be a gift. Breast Cancer treatment is all about removing the malignant tumor from your body, and truth is, most of us have some malignant people in our lives as well. Consider these moronic statements as the malignant people just raising their hands saying "Me! I'm the dumb ass who does not deserve your time, your energy, your love! Kick ME to the curb!" They're making it EASY for you! (Ok, I'm totally over simplifying, and I acknowledge the intense pain that can accompany removing toxic people.) You may be better off in the long run without these people. And of course, there are those that honestly mean well but are just lacking in ability to offer appropriate support. (I affectionately refer to this group as the "ding dongs.")
Have any favorite LEAST HELPFUL things that people have said to you since diagnosis? Any strategies to deal with them? Share in comments below!
#Our Story is a new feature where Tribe members share reflections on their cancer diagnosis. Our first installment is by Erin Cummings.
The Fallacy of Strength
“You’re so strong, you’ll beat this.”
“Cancer doesn’t know who it’s messing with.”
“If I know anyone who is strong enough to kick cancer’s ass, it’s you.”
Even before I became a cancer patient, I was a Cancer by way of my horoscope. If you believe in these things (and I do), this gives me a seemingly impenetrable shell. To the outside world, I seem powerful, fierce, and unscathed. However, like a crab, I am completely mushy on the inside. I have often thought of this as my secret gift; underneath the tough exterior was a beautiful well of empathy for others..
When I was diagnosed with breast cancer, I was constantly told how strong I was and that I was going to beat it. It was an endless barrage of support by way of cheerleading. They had good intentions, don’t get me wrong. In fact, before I got cancer, I may have read lines from similar scripts. After all, isn’t that what we’re supposed to say: You’re so strong. You will beat this. At least, that’s what we want to be true when someone we love is diagnosed with an illness over which we don’t really have any control.
However, being on the receiving end, this is what I heard: When people said, “you’ve got this,” I heard, “this should be easy for you.” When people said, “you’re so strong,” I heard, “please don’t complain.” When people said, “you’re going to kick cancer’s ass,” I heard, “I don’t really know how to be here for you right now, so I’m just going to say what I think I’m supposed to say in this situation.”
The truth is that strength doesn’t mean a damn thing when you’ve been diagnosed with cancer. In some ways, I felt like the passive participant, being advised by others, by experts—like, by doctors who looked at black and white images of spots and lines and somehow knew that what they were looking at was X instead of Y and then decided which new therapy would drip from my IV bag. Or by the surgeon who meticulously sliced me open, scooped me like an avocado and zipped me back up again. Or the radiology oncologist and her team of laser wizards who radiated my body ad nauseum.
When people offered to pray for my strength, I wanted to say to them, “Don’t pray for me. Pray for my doctors, that they make the right decisions for my care. Pray that my health insurance stays intact. Pray that I figure out how to do my disability paperwork because the parking at the hospital is absurdly expensive and the chemo ward doesn’t validate.”
However, the biggest problem that I had with people celebrating my perceived strength was that I felt like in moments I needed to most, I wasn’t allowed to be weak. My breakdowns and my vulnerability were hidden behind closed doors. My fears and my anguish and my rage were vomited on the few people I allowed in. And they were forced to bear the brunt of it because I didn’t feel like I could share that ugly, pathetic, soft side with everyone. I wanted to say, “I’m a hack. I’m weak. I’m not strong. I’m a fucking mess and I don’t want to do this and I can’t do this and I just want to buy a one-way ticket to Mexico and lay on the beach drinking cocktails until whatever this awful disease wants to do to my body just does it already and I don’t even care if I die at this point.”
And it was in those moments that I started to realize my true strength. It took me actually pushing through and making the decision every three weeks to go back and get the infusion, knowing what I would go through, but not knowing if it would be worse this time. As my estrogen levels plummeted and my hormones became as predictable as Pop Rocks, my mind went to places that I had never imagined. I went really dark. I read a story of a woman in her 90s who was diagnosed with cancer and decided against treatment and lived her life until she died. I don’t think I’ve ever been more jealous of anyone in my life. But I chose to live. I chose to live in discomfort and sometimes agony. I chose to let my body get shot up with poison. I chose to cut off beloved parts of my body. There was my strength. Maybe that’s what people had been talking about all along when they mentioned my strength, but I felt like I was discovering it for the first time.
When we are diagnosed, we have a rare opportunity that most people don’t get until late in life. When it’s time for people to die, a lot of times, it just happens – a heart attack, a car accident, a tragedy, or they just get to that age where death is an inevitability. When we, as young people who are diagnosed with cancer, are asked to begin treatment, we are actually being faced with the decision of continuing or ending our own lives. Unless we are legal minors, no one will put a gun to our heads and force us to accept treatment. We could say no. We could just say, “I’m not really where I want to be in life and I think I’m just going to check out.”
Yet, we press on. We move, sometimes just shuffling one foot in front of the other, in a bit of a haze, because if we stop for too long, we may not get going again. That is where we need strength. But it is important to note, that kind of strength doesn’t mean: Cancer doesn’t know what it’s up against. Or, Cancer picked the wrong girl. Even as I participated in my cancer treatment, day in and day out, there was always an element of “cross my fingers, hope this works.” Because I might be strong, and I might make strong decisions, but cancer doesn’t kill someone else who is making those same decisions because they are “weak.”
At this point, many of us have known women and men and even children who were stronger than we could ever pray to be, yet died of cancer anyway. There is no shame in dying of cancer. It has nothing to do with strength. The strength lies in the ability to be treated for cancer. It takes strength to put your life and your dreams and your petty little life dramas on hold so that you can be sick for a year in hopes of getting better.
I’m now learning that, in my first stages of survivorhood, I need a new kind of strength – the kind of strength that forces me to go about my day without being sucked into a vortex of fear that the cancer will come back. However, at this point, I know I’m strong enough to do that. I know that, having been faced with my own mortality and choosing to step forward, I made a choice to live life on my terms. Each and every day, I have to remind myself that I’m strong. I have to remind myself that I chose to stay here. I have to remind myself that, with that choice, comes the responsibility of making my life what I want it to be.
Now, when people tell me how strong I am, I simply say, “Thank you. I am stronger today because of it.”
Erin Cummings is an actress, activist, Founder of the non-profit Mittens for Detroit, and she currently sits on the Advisory Board of Cancer Free Generation, a division of Tower Cancer Research Foundation. She was diagnosed with Stage 2, HER2+ Breast Cancer two months after her wedding in 2016. She credits her superhero husband, her Breasties, and the word FUCK for getting her through her first year of marriage and cancer treatment at the same time.