The beginning of March 2015 was the worst week of my life.
I was diagnosed with breast cancer, quit my job of 18 years and had to put down our beloved dog, Rocco. Getting cancer gave me the courage to quite my job.
Interestingly enough, 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. The problem, as mentioned earlier was discovered 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. Luckily, they got me 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). It’s a 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.I was in shock and needed to get much more information before making any decisions.
My husband and I searched the internet for any and all information about TSC, most of which sounded horrible. Seizures, autism, behavioral problems, and skin issues were only some of the things that could happen to our child. We discovered a TSC clinic nearby and made an appointment to see the head of the department, to get first-hand information about the possibilities. He helped calm us down. About 33% of cases are mild, 33% moderate, and 33% severe. I knew that we were never going to terminate unless we knew for sure that the child would be in pain or miserable for the rest of her life. No one can give definite answers!
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 specialist.
The white spots on her heart are called rhabdomyomas, and there was also a small hole between two of her heart chambers. As her condition could require immediate surgery in the neonatal cardiology unit at Children’s Hospital, and they 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.
A 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.
We love Children’s Hospital of L.A. They set us up with a cardiologist (heart), neurologist (brain), nephrologist (kidneys), and various other doctors as we need them. The nephrologist told me that he had never seen that many cysts on a baby. Usually, teenagers come in with kidneys like hers. We were also informed that she would need a kidney transplant eventually. At eight years old now, her kidney’s are holding steady so far.
The first year was really a blur, not only did I have to recover from pregnancy and a C-section, hit the ground running with twins at age 40, but schedule and attend all the doctor’s appointments while watching out for any signs of seizures or developmental delays triggered by the brain tuber. It wasn’t until eight months that we saw her first seizure, just a momentary loss of consciousness causing her to fall while crawling. Amid all the clumsiness of being a baby, we weren’t even sure it was a seizure, but I guess I knew deep down in my heart that it was one and I emailed our neurologist right away. Without even seeing her, she diagnosed it right away. She was having complex partial seizures. Since we had a medical team in place, it was easy getting her on medication right away. Over the course of two years trying several medicines, we landed on one that has kept her a seizure for six 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. It turned out that we were very fortunate that she’s a mild-moderate case but that doesn’t stop the worrying. More and more treatments are coming out for this horrible disease but there still is no cure, so we keep hoping she stays stable for as long as possible. Once we passed the three-year mark and knew she didn’t have autism, I could finally breathe a sigh of relief.
Then I read a post online about a girl who had a mild case of TSC and was seizure free for years. She was also brilliant and athletic. One day, she went out for a run and had a grand mal seizure. She fell to the street, and there was no one around to help, so she died. 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 do need to focus on today and to enjoy the little moments that we get with these kids.
I’m not perfect. I have my days when they are driving me insane, and I’d much rather be playing a game on my phone than dealing with them, but I do try. I gush over my kids because it’s a small miracle that they are even here and a bigger wonder that my daughter is doing so well.
So, fast forward to 2015 again, and now I’m facing my mortality as if I hadn’t had enough to deal with already. Only a few weeks after feeling the first lumps, I have diagnosed Stage 3 breast cancer. My team of doctors recommended Chemo, surgery, and radiation.
BTW, I came up with Chemo Sabe after my very first chemo. It was a stressful day. My brother and mother came with me to the infusion center. As we were driving home, it just popped into my head, that I felt like I was Chemo Sabi. We all had a good laugh, and it eased the whole experience for them and me. I felt like my doctors were right 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 the kids after getting some advice from friends who had been through the same thing. We told them all about my cancer and what the doctors were going to do to help Mommy. The twins were five 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 sick, and couldn’t 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 well.
My body and immune system were a wreck from the chemo and radiation. I would develop all kinds of little infections that I never had before. I had a lot of fatigue and memory problems from the chemo. I would ask every doctor when could I expect my immune system to be back to normal, but no one had answers.
At the completion of a rough year of treatment, I was done with cancer. I still had follow-up appointments, and I knew that if I could make it to the 5-year 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 five years of that! My poor tushie 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 get 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 BC 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.
My doctors hadn’t told me (nor do they inform others, as I’ve found out) that 30% of all breast cancer patients, no matter what stage you are diagnosed with BC, eventually develop metastatic cancer, currently incurable, leaving you fighting it for the rest of your life. They may give you odds on survival and recurrence which isn’t the same thing, but they never say you have a chance of it moving to other organs.
So, now I had to go back to my oncologist and figure out a plan.
She put me on a brand new drug called Ibrance, which for some people is working well-shrinking tumors and preventing it from spreading any further. I didn’t tolerate it well. I got massive migraines and extreme exhaustion. We lowered the dose two times but it still didn’t agree with me, and in 2017 we discovered that my cancer had spread to my lymph nodes on my left side, opposite from where it had started. For six months we tried various combinations to find medicines that didn’t make me intolerably ill and also worked, to no avail.
My migraines were getting out of control, and after being passed around from doctor to doctor, I ended up at a neurologist’s office. She immediately told me that taking out my ovary and suppressing estrogen set off the migraine hell I had been going through, over the course of six months. Again, no one even thought to tell me about that possibility.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 tough 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 seven-year-old? All I could say was that they are good doctors, and are trying to find the right combo for me.
One day, she was feeling 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 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; 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 excellent at karate, that they don’t understand puns and witty humor like she does. Again, the smile grew, and she started adding her own ideas. Whew!
Sometimes you nail parenting moments like this, and sometimes you don’t. Sure I’m not finished with this problem for good, but at least it calmed my baby girl down this one 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 got in a car accident and died. If that doesn’t give you perspective, nothing will.
So, I keep hanging in there hoping that I will see these beautiful children grow up. Enjoying seeing them discover new things and introducing them to some of my favorite things. They are what keeps me going every day, 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 every obstacle. Whether that’s finding a free parking spot in Santa Monica when I have to 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!
This journey, being a mom to my munchkins, and trying to deal with all this other cancer stuff has been arduous.
I wish we didn’t have all these struggles, but it has made all of us stronger and made us appreciate the life we have because you never know what’s going to get thrown your way. Be as present as you can with your kids because time flies and even if you aren’t facing the same obstacles as I am, you will never regret having a pillow fight with kids, but you will regret spending extra time at work. No one is going to say “I wish I worked more” on their death-bed, but you will wish you had more of those silly moments with your family.
“Life is a lemon and I want my money back!” Meatloaf