The Great Mask Debate

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Emmy turned 9 years old on July 2! Charlotte is 11, and Theo is 6. For those of you that have been following this blog from the beginning, do you feel old now?? Haha. When I started this blog, Charlotte was 3!

Emmy’s kidney surgery went well. Thank you for all of the support! I was terrified for the surgery, but everything went smoothly. One of her kidneys had an obstruction so, even though the doctor was able to fix the obstruction, the kidney will probably only function at 17% from this point on. Her other kidney appears to still be functioning at 100%, which is great.

COVID-19 has been tough, of course. It’s tough on everyone. We actually got very, very sick in March. Everyone in my house got sick, but Emmy and I had it the worst. We both ended up in the Emergency Room with pneumonia, and it was right at the start of COVID-19 hitting my state very hard, so we were sure that’s what it was. I was tested twice with the nasal swab, and both tests were negative. Emmy was also tested, and she was negative. We also negative for the flu. The doctors ran the full respiratory panel on Emmy and I, and the only thing that popped was “mycoplasma pneumonia,” which is a bacterial pneumonia and is also known as “walking pneumonia.” However, it’s known as walking pneumonia because you can walk around with it and not know that you have it. Ummm…there was no casual walking for either of us, and we DEFINITELY knew we were sick. No doubt about that! Half of the doctors I saw thought it was actually COVID-19 and that the tests were wrong, and the other half of the doctors thought it was “just” walking pneumonia.

I got the COVID-19 antibody test and that, too, was negative. So the data tells me that I didn’t have COVID-19. But I’m suspicious of the tests because I truly had all of the symptoms including loss of taste and smell, fevers of 103.9 degrees, chills that shook my whole body, night sweats that drenched the mattress and my clothes in sweat, and a wicked dry cough.

If I DIDN’T have COVID-19, I certainly don’t want it because good ol’ walking pneumonia was absolutely brutal!

One thing that has been very eerie for me during this time is to read and hear about people with COVID-19 who are put on ECMO. To treat people who are having trouble breathing, doctors are trying to move away from ventilators and lean more towards ECMO in the Intensive Care Units.

ECMO is a word that I had never heard before May of 2013 when Emmy was put on it. Emmy had heart surgery in May of 2013, and she went into cardiac arrest twice after the surgery when she was in the recovery room. She was in such bad shape that she had to be put on the life support machine, ECMO. (I kept thinking that they were saying “Elmo” at the time because Emmy was really into Sesame Street and Elmo.) They had to paralyze her body and then put tubes in her that circulated other people’s blood throughout her body to keep her alive. (To anyone who donates blood — THANK YOU! THANK YOU! THANK YOU!) Emmy was on ECMO for about a week, and we didn’t know if she would live or die. It was truly the worst time of my life, and we’ve been through some pretty crappy times. Amazingly, she survived. But I have PTSD.

Now when I see or hear the word ECMO (and it’s been coming up a lot lately with COVID-19), I’m instantly transported back to that hospital room watching my toddler paralyzed on a bed hooked up to a machine that kept her alive.

I’m reminded of all of this during the fights about mask wearing and whether or not we should take this pandemic seriously. Back in March, I read an article by Micah Lynnes, a woman who I believe lives in Canada and wrote about her medically fragile daughter at the start of the COVID-19 outbreak. She wrote, “When you say ‘only the vulnerable are at risk,’ know that your ‘only’ is my everything.”

That quote really hits home. Emmy is vulnerable, and even I am vulnerable. Two years ago, I had breast cancer followed by a full year of chemo, and my white blood cell count is still very low. My body hasn’t recovered yet from chemo, and now my oncologist has scheduled a bone marrow aspirate and biopsy to find out why my white blood cells haven’t rebounded. So, indeed, both Emmy and I are vulnerable. But the bad stuff doesn’t just happen to people who are medically fragile. Just read about healthy, 41 year old, Broadway star Nick Cordero with no pre-existing conditions who tragically lost his life to COVID-19.

I think the path to getting back to normal life involves everyone wearing masks. Right now, with some wearing masks and many people not, the virus is spiraling out of control. If we can join together and agree that there *is* a way out of this, and it involves everyone doing his/her part, I think we’ll be in a much better place.

I know that we’re all anxious for schools to open…but can I really send Emmy back if we don’t get this virus under control? She’s vulnerable, and she can bring it home to me, who is also vulnerable. And if I can’t send her back, I certainly can’t send Charlotte or Theo, who could just as easily get it and pass it to us.

But I WANT to send them all back to school for their social and emotional well-being. I think about the moms that I know who are teachers and *also* have medically fragile children. How are they balancing all of this?

So we’re at an impasse, as I feel a September start date for school breathing down my neck…

As I see it, wearing a mask is a sign of respect. You’re kindly and respectfully protecting others from your droplets (read: germs). Just as I wear a mask to protect you from my droplets, you do the same for me. We can do it for our friends, and we can even do it for strangers because you never know who might be medically vulnerable. Looking at Emmy and I, you would NEVER know that we might get sicker than others if we were to get COVID-19. However, even though my hair is all grown back from chemo and I appear to be a very healthy 41 year old, my bone marrow may be permanently damaged, which affects my white blood cell count and makes me more prone to viral and bacterial infections.

I went to a Farmers’ Market today, which was lovely! It was so nice to get out! About 95% of people were wearing masks. Only 5% were not. I have to say that I did look sideways at the non-mask wearers. I thought, “Wait a second…we’re all protecting you from OUR germs. Why aren’t you protecting us from yours?!?”

Some people have said that they don’t worry about getting COVID-19 because they don’t have pre-existing conditions and can fight it off like a champ…therefore they don’t wear masks. But I’m not asking you to wear a mask because of your body’s response to COVID-19. I’m asking you to wear a mask as a sign of respect for your fellow humans. You’re protecting us from your germs, and we’re protecting you from ours. It goes both ways, and it’s respectful — plain and simple.

We don’t know who has pre-existing conditions as we walk around in the world, but we do know that 40% of people may be asymptomatic carriers of COVID-19. Can you imagine unknowingly infecting someone else, especially someone who is medically fragile?

As the article by Micah Lynnes says, “Your ‘only’ is my everything.”

Anticipation

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Thank you so much to the many people who reached out to me after my last post, in which I shared that I had breast cancer. I’m sorry for not replying to everyone. There are emails sitting in my Inbox, which I have been meaning to reply to for months. I’ve really had an aversion to this whole cancer thing. I just don’t even want to THINK about it.

Of course, today is the start of Breast Cancer Awareness Month, so I will definitely be thinking about it. But there are just so many emotions that come up. Mostly, I feel grateful that I’m still here. I also feel sadness because the last year was REALLY difficult, and my body was altered in so many ways. I’m still dealing with the side effects from surgery, chemo, and a drug that I will be taking every morning for the next 10 years. I have a swollen arm (possible lymphedema), aching joints, and pain in my feet. My skin has had a horrible reaction to everything too. I thought my acne years were behind me! But then I feel guilty for complaining because at least I’m here on planet earth, and that’s all I wanted in the first place. My emotions surrounding cancer are complicated, and only more writing will help tease them out.

But, for now, I will tell you about our next adventure. Emmy is having kidney surgery next Monday, October 7! GAHHHHH!!! I was telling my husband, Dan, that our life is TRULY a soap opera. We’ve had more “adventures” than we’d care to mention.

Long story short: We did an MRI to check Emmy’s kidneys and discovered that one of them is barely working anymore. From what I understand, our kidneys are supposed to be working at 50/50. Emmy’s kidneys are at 83/17. We have no idea what happened or when it happened, but there APPEARS to be an obstruction. She had an ultrasound done in 2013 which revealed 2 perfectly healthy kidneys.

That was right before her heart surgery…after which she had 2 cardiac arrests and was on a life support machine for a week. Could that have caused the obstruction? No one knows…

The surgeon would like to try and repair the obstruction, which should keep her kidney working at 17%. Unfortunately, the kidney will not restore itself, but we’re trying to preserve the little function that she still has.

Emmy has not had any symptoms and is not in any pain. Her good kidney is picking up all of the slack, so her blood work has always been spot on.

You may know that anesthesia is a huge concern for people with Williams syndrome. (You definitely know this if you’re a parent of a child with Williams syndrome because every time your child has to go for anesthesia, it’s a BIG DEAL.) So while I don’t like surgeries anyway (and, boy, have we had our fair share as a family!!), it’s even more nerve-wracking when the person on the operating table has Williams syndrome.

So now we sit in anticipation of next week.

Speaking of anticipation, this surgery was actually scheduled for September 9th. So we already went through a whole rollercoaster of emotions on September 8th as we drove 2 hours to the hotel where we were due to spend the night. We got a call when we were literally a block away from the hotel. The surgeon had an emergency HIMSELF and was in the hospital. Surgery canceled. When I got off the phone and told Emmy the news, she responded, “Oh, I’m so embarrassed! I did all of that crying for nothing!”

We drove back home in shock, though I also felt a huge sense of relief. We got a call a couple days later saying the surgeon is ok now and that surgery would be rescheduled for October 7.

October is Emmy’s favorite month because it has her favorite holiday — HALLOWEEN!! This kid loves Halloween like no one else I’ve known. She thinks about Halloween 365 days a year. We don’t really know how quickly Emmy will be running around after this surgery, but I am HOPING and PRAYING that she will be able to enjoy trick-or-treating as much as she always does.

I’m also hoping and praying that I keep mentally sane on the day of her surgery. Sitting in the waiting room with a bundle of nerves is something I have done many times now, and it’s very, very challenging. Until then…anticipation…

Here’s a picture of the 5 of us at a Breast Cancer Walk/Run earlier this year. Through it all, we keep on truckin’!

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Surprises

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On May 4, I was doing a breast self-exam, something the American Cancer Society unbelievably no longer recommends (See bullet point 5: American Cancer Society Recommendations). I was performing a self-exam because 10 years ago, my good friend found a lump which was diagnosed as breast cancer, and she had been a vocal advocate of doing these exams every month.

Since having kids, my breasts had become very dense, so I was used to feeling benign lumps. But on May 4, I felt a lump that stopped me in my tracks. My first thought was, “This is what cancer feels like.” It was hard, painful, smooth, perfectly round, and movable. It felt like a marble. But when I Googled the symptoms, mine didn’t match those of breast cancer. Breast cancer is typically not painful, oddly shaped, and doesn’t move. However, I did my due diligence and went to my gynecologist the next week. She felt the lump and said, “I think you pulled a muscle. I’m not concerned.” To which I responded, “We have muscles in our breasts?” And she replied, “Yup!” (I’ve come to find out this isn’t true…yikes.) She handed me a prescription for an ultrasound simply to put my mind at ease but assured me it was nothing as I walked out the door.

I’m a mom of 3 with little time on my hands, and I had just been assured that the lump was nothing, so I promptly put the ultrasound prescription on my desk…where it got buried under a mound of papers.

Weeks passed with the prescription gathering dust, until one morning when I had breakfast with a close friend who had come to town. My friend mentioned that she had a cyst in her breast, and I responded that I probably had the same. I told her my story but said that I was very busy and would wait on the ultrasound. (Charlotte was having surgery around this time because she had a birthmark on her scalp that was possibly precancerous, so the bulk of my attention was focused on getting through that surgery.)

To my friend’s credit, she put her foot down. She said she had heard of too many stories in which a woman said, “I’m sure it’s nothing,” and it turned out to be something. But I was only 39 years old! Surely that couldn’t happen to me.

However my friend ended up saving my life by putting that nugget of information into my head. When I got home from our breakfast, I rustled through the papers on my desk and dug out the prescription. I then set to work on scheduling an ultrasound.

After an ultrasound, a 2D mammogram, a 3D mammogram, and a biopsy, I got a shocking phone call. A radiologist told me that, indeed, I had breast cancer. The reason I say that my friend saved my life is that my cancer was aggressive and fast moving. It was growing all over my breast. Had I put off the ultrasound, like I intended, I would have been in a much different place when my treatment began. I will FOREVER be grateful to my friend for pushing me to get the ultrasound.

Of course, I went through every emotion you can imagine. Name a feeling, and I had it. But the one that kept cropping up for me was actually regarding Emmy!

Up until the breast cancer phone call, the most shocking call I had ever received was from the geneticist who told me that my daughter has Williams syndrome. So I couldn’t get over the fact that I felt like we already had our *thing*. You know how they say that every family has a thing? Williams syndrome was our thing!! I couldn’t understand why we had another *thing*. And a major one at that!

I quickly searched online to find some people to talk to. One woman was a breast cancer survivor who did yoga. Turns out she had another *thing* in addition to cancer. And the more I searched, the more people had lots of *things* in their lives.

So, yes, life is hard. But I sure do love living it! Therefore, I did everything I needed to do to rid my body of cancer. I had a double mastectomy, an 8 hour surgery which was followed by a rough recovery. I then had another minor surgery to put a port in my chest. I had 4 rounds of heavy chemo, which were infused through the port. My hair fell out. I then started a lighter version of chemo, which I will be on through August 2019. I did months of physical therapy to try and get my arms working again. I had another surgery last week to finish the reconstruction of my breasts. And some time early next year, I will start taking a pill that I’ll continue to take for 10 years.

Everyone asks how the kids are doing, and the truth is that they’re ok right now. My parents have been an enormous help, so they were able to keep the kids’ schedules on track. They didn’t miss one day of gymnastics, karate, voice lessons, etc. The people in our town have also been amazing and sent us food, brought our kids on playdates, and checked in to see how we were holding up. And, finally, Dan has been BEYOND BEYOND BEYOND wonderful. He did everything on the home front, while managing a full-time job.

It’s been an exhausting few months for everyone, but I’m actually starting to feel better…finally! I’m still quite bald, which stinks. One day I’ll write about losing my hair, which was more upsetting than I thought it would be. I didn’t realize I was so attached to my curls…

I can’t believe I have to add another category to my blog: Breast Cancer. This was intended to be a blog about Williams syndrome and Emmy’s amazing smile! We’ve had some ebbs and flows in the past 7 years, I guess…

While the diagnosis of Williams syndrome sounded scary at first, Emmy has brought SO much joy into our lives BECAUSE she has Williams syndrome. And I’ve loved connecting with other families who share the bond of Williams syndrome. Even though Williams syndrome was a complete surprise, it ended up being a great surprise.

When I first got diagnosed with breast cancer, I kept wishing that it would also turn into a great surprise. So far, I don’t think so…

However, I will say that I met many wonderful people, whom I would not have met if I didn’t get this diagnosis. And I was incredibly touched by the outpouring of support from family, friends, and the people in our town. I feel bad that my kids had to watch their mom go through this, but I also think they learned a lot about resilience — and about what really matters in life.

So there we go. 39 years old and diagnosed with breast cancer. As my friend always says: Ladies, check your girls! Even if the American Cancer Society no longer recommends self exams, I recommend it. If I hadn’t checked myself, I wouldn’t have found my tumor until months later at my 40 year old mammogram, and my already aggressive breast cancer would surely have spread.

The best day to check yourself is…today! 🙂