New mom, new diagnosis

Ok I got the dopamine rush after my first post, so I’m coming back for more. Sorry occupational hazard ... did I mention I‘m a therapist? : )

I have so many thoughts in my head I want to get out, but first I have to catch you up on the last 3 months. Let’s start with the diagnosis.

When I was about 7 months pregnant I got the worst, most persistent cough, and it wouldn’t go away. I went to the doctor and he told me I had bronchitis. This cough lasted the rest of my pregnancy and since I had a huge baby inside my belly the cough often led to sleepless nights AND throwing up. Pregnancy is glorious 😍

I returned to the dr at 38 weeks pregnant with the same annoying cough. I felt ridiculous for going back for a cough but I was so worried I would have it during labor. The dr assured me “your cough will be gone by the time you deliver, and” he added “ the last thing you’ll be thinking about while giving birth is a cough”. Well he was half right! It didn’t go away, but it’s definitely the last thing I thought of when I pushed out all 8.5 lbs of baby girl.

Post birth I was so exhausted, recovery from delivery is no joke to begin with. So as a first time mom I just wrote off all of my symptoms as normal. But I do remember I kept asking my experienced mom friends “will I ever feel myself again?” There were sleepless nights, crazy sweats, fevers, AND I was determined to breastfeed- by the way NO ONE tells you how hard that is! I remember crying the first week wondering how I would do it all. Again I felt like such a wimp and it’s amazing how quickly the mom guilt snuck in. I remember crying as Charlie screamed at my boob not knowing how to latch. By 4 weeks we finally had it down. But after 5 days of pumping in the hospital I sadly learned I could no longer breastfeed due to the chemo pill I had to take. A small price to pay to be here to watch her grow up.

What happened next was unexpected and heartwarming- my mom friends rallied together and donated their breast milk. Their HARD EARNED liquid gold- they so generously and without hesitation gave to Charlie. At 4 months old she is still getting donated breast milk!

Ok... let me get back on track, 6 days postpartum Alex made me go to the doctor. I made an appointment and I remember getting a call from a nurse right before I left saying, let me get this straight- you’re coming in 6 days after giving birth to see us for a ...cough?!?! I almost canceled the appointment right then and there because when you put it that way it sounds ridiculous. But something inside me said to go.

After a chest X-ray the dr called and said you have pneumonia. I remember crying and saying to him, “but I’ll be ok?” It’s like I knew. And he said, “yes you will be fine”. I hung up and cried as I sang to Charlie “you are my sunshine” I looked at Alex and said, “I don’t want to leave her”. I don’t know what made me say that- but i had a gut instinct something wasn’t right.

After a week of antibiotics and no relief from my “pneumonia” my doctor sent me to a pulmonologist , the sweetest doctor I’ve ever met. He went above and beyond to see me at 6 in the morning before anyone got there because he knew I had a new born baby at home. I remember saying to him “I googled it and I’m scared I have lung cancer”, he assured me I was ok and it was just a nasty case of pneumonia- and reminded me to stay far away from Dr. Google. But I kept calling back because once again, it wasn’t going away. Let me recount all the minsdiagnosises (which I don’t blame the drs for, I was young, healthy and just had a healthy baby- cancer was the last thing on anyone’s mind): bronchitis, pneumonia, asthma. At one point I was even told maybe I had all 3!

I finally got on some steroids and had a week where I was pretty much cough free. I remember proclaiming to my friend “the cough is gone and I am finally better!”

Charlie was 4 weeks old. It was a Sunday afternoon and I had a coughing fit followed by an extreme panic attack (I hadn’t had one of those in a really long time). I turned to Alex and said, something isn’t right. We called my doctor and he said “come see me in the morning or if you need to, go to the ER”. I tried to go to bed early that night and I felt the sharpest pain I have ever felt in my right chest. I told Alex, in between sobs, we have to go to the ER. I was sobbing bc I knew I had to leave Charlie, and something in me knew it wouldn’t be for just one night.

The doctor in the ER said, “your CAT scan is abnormal and you need to see your pulmonologist right away”. Instant, intense fear coursed through my veins. I felt like I was sinking into the floor. Fast forward a few hours, i was back home when my doctor called and said I needed to be immediately admitted to the hospital downtown. The phone call was a blur “Abnormal scan, immediately admitted, Tuberculous, AIDS, fungal infection, have you been out of the country recently....” What?!?! Out of the country? AIDS?! I just had a baby!

I don’t know how I did it, but between sobs I packed a bag, kissed my baby goodbye and was admitted to Penn medicine hospital in the city where nurses and doctors greeted me, they had been waiting for me....and I was immediately quarantined. I remember everyone’s eyes so well, because every nurse and doctor who came to my room had to wear a mask. Alex, who never left my side, was told he had to wear a mask too. But why? Because they were concerned that I had an infectious disease “cancer is very low on our list”. They began testing me for tuberculosis and a multitude of other infectious lung diseases. Ok, so the head doctor said cancer is low on the list, then why do I have this intense fear it’s cancer? I began to pray I had tuberculosis.

All hours of the day doctors and residents, covered with gloves and masks, of every speciality, rotated in and out asking me the same detailed questions over and over again, this was one of very few times I hated being the center of attention. I quickly felt like i was on an episode of Grey’s Anatomy. This can’t be real life. In between IV’s and being poked and prodded I sobbed, because i missed Charlie... and because of the unknown. The scariest most fearful feeling... not knowing what lies ahead. One doctor said to me “my patients always say the hardest part is the waiting and not knowing, even if they find out they have cancer, they say that’s better then the unknown”. At the time I found that hard to believe, but he was right.

The nurses became my angels. They took such amazing care of me, physically and emotionally. We bonded over pictures of Charlie and they guarded each pumped bottle of breast milk like the precious gold it was and put it away in a protected fridge so I could bring it home with me. That made me feel like I had some control. I FaceTimed Charlie, it was so hard to do... in some ways it felt easier not to think about her. But my heart ached so bad to see her I swear I could feel it throbbing. I cried probably every hour saying “I just want to be with my baby”. No mom should be away from their one month old baby for that long.

3 days and 2 nights. I became close with all the doctors and nurses, they were amazing and truly helped me get through being away from Charlie. They finally had me get a biopsy of my lung, I remember coming back to my room and Alex was gone. I sat in my bed, so afraid and sad. When I heard a familiar voice... it was my good friend Shae on a popular daytime tv show. I knew in that moment God had given me her to comfort me. It’s the little things that make all the difference in the greatest moments of fear.

Day 4 of being hospitalized the doctor came in and gave us the news. The biopsy had come back positive for cancer. My parents were on their way down to visit. I accepted the news rather well, the doctor was right, the not knowing was the hardest part. Then it hit me. At 36 years old, I have to tell my parents their baby girl has cancer. That to me was the hardest part. I remember right before my parents walked into the room one of my nurses came in with tears in her eyes, she had just heard the news. I was comforting her. She had to hide in the bathroom so my parents wouldn’t see her cry.

I don’t know how I mustered the strength, but I told my parents the worst news of their lives “I have cancer” blank stares. They handled it as well as I did, I think maybe that comes with shock. The rest of the night is a blur.

Day 5- i just want to go home and be with my baby girl. The doctors wanted me to wait until they got all the results back. But I told them I was leaving, I needed to be home with Charlie. They sent the oncologist in before I left. She reviewed the results and said we had to wait to find out exactly what kind of cancer it was, but she understood I wanted to get home. After all, she was 36 years old with a 6 month old baby at home. Man how I wish I was in her shoes and not the other way around. But at the same time, it gave me comfort that she understood my situation.

“You have lung cancer” she said, “we don’t know much more about it yet but should get results back soon”

“Ok, but I can still live a long life right?!” I said in between tears.

I don’t remember what she said next, but I remember she hesitated and stumbled through her words. I realized quickly she couldn’t give me the answer I was looking for.

We drove home. I was in a complete fog staring out the window- it wasn’t the same world I once knew. Everything and everyone was different. Would it ever be the same? Would I ever feel normal again?

Reunited with my baby girl I fluctuated between extreme joy (from being home with her) and extreme shock. That’s when we got the phone call. The same 36 year old doctor, Christine Ciunci, called me at 8 pm at night. We weren’t expecting her call. And she sounded.... excited? Is that possible? She told us the gene testing came back and that I have a specific mutation often found in young East Asian females. Well i was certainly young and female, but East Asian didn’t fit the bill. Was this good news? She told us the team of doctors applauded when they found out, apparently there was a chemo pill just FDA approved in May 2018 that immediately shrinks the very cancer I have!! What beautiful news among all of the bad news! It sounded like the best, worst case scenario.... and if a team of speciality doctors were applauding- you’re damn right I was too!!

So I would begin taking this magic pill daily ($18,000 a month without insurance!), and the best part is- I wouldn’t lose my hair! At least that was the plan... which I soon found out, rarely goes accordingly. Stayed tuned.

xo,

Janelle