4 Lobe Day

⚠️Warning ⚠️ This post contains graphic material (not photos).

In honor of this week being my 9 year anniversary of “4 lobe day”- a funny phrase my husband came up with to make light of an otherwise bleak situation – I’ve decided to share my story. This journey has been a pivotal and monumental part of my life. The lowest and worst time in my life. A time that has left me with ptsd and anxiety. But a time that I’ve grown from and gained strength and prospective from.

It was Christmas 2011. After several miscarriages in was *finally* pregnant. I was 20 weeks and we’d just found out we were having a girl. We were thrilled! Life was good!! After the holiday I got a cold that worked it’s way to my chest as it always did. I had bronchitis at least once a year as far back as I can remember. This year was no different. Except that I was pregnant. I coughed and coughed and coughed. For weeks on end. After 9 weeks of coughing I saw a dr who told me the virus everyone had was lasting for ages. I was in agony. The weeks crept on. More coughing. It was starting to affect my breathing. I saw a pulmonologist who told me I had pregnancy induced asthma. They gave me some inhalers. Nothing helped. The months carried on. Winter turned to spring. Our baby would be arriving soon and I was struggling to breathe. Everyone told me the baby was putting pressure on me, I had asthma, etc. My intuition was telling me something was wrong. I was nearing 20 weeks of coughing and struggling to breathe. I was now 39 weeks pregnant. My brother was graduating for college. We tempted fate and went off Cape to see him graduate.

My brother was able to secure me a handicap parking spot because I was unable to walk more than a few feet without a coughing fit. On our way home we stopped at the bridge for the bathroom. On my way out of the car was the 1st time I coughed up blood. My veins literally went cold. I remembered Nicole Kidman in moulin rouge when she was coughing blood and dying. I KNEW this wasn’t normal. I was paralyzed by fear. I was afraid to tell my family or husband. I was so scared. But I called my dr a few days later. I scheduled another appointment with my pulmonologist. He told me that I had so much extra blood from being pregnant and had been coughing so long he wasn’t surprised. It happened again during the night a few days later. And again. And again. It was getting worse. It was something from a horror movie. So graphic and horrific. I started having flashbacks and didn’t want to be in my bedroom/bathroom/parking lots etc where it happened. When I was about 41 weeks pregnant I tried to walk at snail speed into the grocery store and ended up coughing up a puddle of blood in the parking lot. I was so scared and embarrassed…. All the emotions.

Somehow I survived 42 weeks of pregnancy. I was induced. But I had my unmedicated hypnobirth I’d planned. I was so proud of myself. I was so blown away by the intensity of it all. But mostly I was SO in love. My cough lingered but the blood stopped. I focused all my energy on my sweet new baby girl. The months went on. I continued to cough and have trouble breathing. I went back to the pulmonologist again and this time he said I couldn’t take the inhaler I needed until I stopped breast feeding. I always had anxiety following me around like a shadow. My inside voice kept telling me something was wrong. So I found a new dr for a second opinion. My anxiety told me the blood would be back. I was pretty sure I was going to die and not see my daughter grow up. The Sumer came and went and I went through the motions but I was numb. Then in October it happened. My fear. I was home alone with my baby who was now 4 months old and I started coughing up blood again. My mother rushed over (they still lived near us then) to help me and my dad stayed on the phone with me to calm my nerves.

I went to the new pulmonologist. He sent me for tests. He suggested maybe I had lupus or RA attacking my lungs. But the tests came back clear. So he sent me for a CT scan. He said they would only call me back if they saw something….. they called me. They said I had a very bad case of pneumonia! They asked if I’d like to be hospitalized. I declined because I couid by stand the thought of being away from my girl. They sent me home with a Z pack and a follow up appointment with the dr in the morning! I was thrilled!!! Finally answers! And all I had to do was take some antibiotics! Life was looking up again.

Until the next morning when I walked into his office again. He told me it wasn’t actually pneumonia. The fluid they saw filling my lungs was blood. And they had no answers why. My heart sank. He scheduled me for a bronchoscopy. Basically they sedate you and stick a camera down your throat into your lungs and look around. I was awake. I was watching the clock. It took less than 5 mins and he turned the lights back on and told me I had a tumor blocking the airway to 2/3 of my right lung.

My world stopped. I’d already had cancer. I’d paid my dues. I had just brought life into this world. My life was just beginning! How could this be? I had so many questions. But I was drugged up. He told me I’d need surgery ASAP and that he didn’t know who would be able to do the procedure. He called me later that evening to talk to me and Ron together to explain what he knew to me. He was going to meet with the team of drs in Boston who did my cancer surgeries to rule out that it was a spread of the cancer I’d had a few years back. And then he’d find a surgeon who could work with me.

Days went by and finally some answers trickled in. It was NOT cancer. It was a carcinoid tumor. Which grows very slowly with increased hormones. It had likely been with me most of- if not all my life. But had grown in size when I had all those pregnancy hormones. He found a surgeon in Boston willing to work with me.

My dad came to Boston with me for my consultation. He had to push me in a wheelchair because I could hardly walk anymore. My surgeon Dr Bueno walked in and introduced himself as the dr who wrote the book they teach at Harvard. He’s brilliant. Horrible bedside manners. But brilliant. He told me even though he teaches this procedure he only does it “maaaaybe once a month” as it’s very rare and complicated. He explained the surgery to us. There is no safe way to remove my tumor laparoscopically. It would involve my chest being cut front to back (12 inches if you’re curious), breaking my ribs, removing the middle lobe of my right lung and then reattaching the top and bottom lobes. He told my dad it was like a break job and he had only once chance to get it right…. (“Or else” was implied). He said the survival rate was fairly good. But not guaranteed. And the recovery would be very long. We digested this news and scheduled the surgery for a couple days later. (He was coming in on his day off to get me seen ASAP)

The days following I was devastated. I was mournful. I was sobbing day and night. I couldn’t stand to be away from my girl more than a few mins. How could I just leave her? What if I died during surgery? The emotional pain was overwhelming. My mom and Ron decided to both accompany me to the hospital. Lorelei would stay with my dad and my college aged sister indefinitely. I had to get a healthcare proxy lined up and make DNR decisions.

The morning of my operation I breastfed her one last time ever. And then handed her over to my sister and walked out the door and fell apart at the seams.

At the hospital I was given an epidural. Which was ironic since I’d just given birth without one only a few months prior. But they kept missing. They tried several times. I was crying out loud behind the curtain my husband tells me. They give the epidural to limit some of the post-op pain. (Lies. It didn’t do a thing)

The surgery was I think 9 hours. Thank goodness it was successful. (Obviously) But I woke up in so much pain. I reminded myself of Bella Swan in Twilight when she changed. I couldn’t breathe. I was in agonizing pain. Every tiny breath hurt. I was tied up to so many monitors and cords. I remember being absolutely parched. All I wanted was a sip of water. But when you have lung surgery they restrict your water intake because excess fluid settles in the lungs! I never knew this! So no. No water for me. For an entire day all I was allowed was to suck water out of a sponge on a stick. (Like an inedible lollypop) It was torture. But the pain. I think I was hallucinating from the pain. Nothing can compare. Not even childbirth. I had two 1 inch tubes sticking out of my rib cage. One to pump oxygen in and one to siphon blood out. So creepy. Once my catheter was out they made me get up to use the bathroom. They wanted me to get up and walk almost immediately. (When I say “walk” I mean shuffle with a walker -.5 mph to the bathroom) They need lung patients to keep moving so they don’t develop pneumonia during recovery. Once I was up I realized I wasn’t going to be laying down again. Forever probably. . I wasn’t able to use any of my core muscles since they’d all been cut open. So I had Ron sleep in my hospital bed and I slept in the hospital recliner from then on. I wouldn’t sleep in a bed again for at least 4 months following my return home.

I was on so so many pain pills. Not even an option (I didn’t take anything after my c-sections except Advil). They had me on copious amounts of every pain pill possible around the clock every couple hours. The day we got discharged they weren’t able to give me my pulls to take. I had to get a script for my pills. Then I had to go to the pharmacy for them. We had to drive through downtown Boston in heavy traffic when my meds were almost worn off to go to CVS. Then I had to go IN because they were narcotics. It was a nightmare. My husband says it was the most stressful moment of his life. (I was writhing in pain at every tiny bump or turn)

When we returned “home” we actually went to my parents house. We moved in with them for about 4 months while I recovered. I wasn’t able to pick up Lorelei for 6 weeks. But they put her on my lap for a few mins when they could. I had the VNA come daily to check on me. I was so sick from the meds. I couldn’t keep anything down. On my 2nd day home (⚠️ don’t read if you’re squeamish) a piece of lung tissue came out when I threw up. I didn’t see. But my dad did. He didn’t tell me. But he sent a photo to my surgeon. They called him late that evening when they got the email and told him to rush me to the ER (in Boston!). I was shattered when I found out. Off my mom and I went for an awful ER overnight.

I recovered very slowly. I wasn’t able to wear a bra for probably 6 months because my incision was right on my bra line. The pain became somewhat manageable after a month or so. Everything was new and hard. Becoming a mom again was a huge hurdle. To be able to go home and take her out to the grocery store and be “normal” took several months.

It’s been 9 years this week. I haven’t had bronchitis since. Now when I do get sick it comes abs goes quickly like most people. I have a “gimpy” lung now. It’s tiny on my right side. But I can breathe again. I’ve had countless CT scans and chest X-rays over the years and everything is clear. I feel lucky to have come out the other side. I always look for the silver linings of course. I know it’s made me stronger. But I still feel so many emotions. I feel robbed of my 1st year as a mom. I feel bitter and resentful. I feel sad and emotional. I still feel physical pain from time to time. I also feel thankful that it was *me* going through this and not my baby. I wouldn’t have been able to handle that pain.

Today I have smaller lungs. And so much anxiety. But my girl doesn’t remember the 9 days apart. She doesn’t remember not being breastfed anymore. I now have 5 baby girls to love on. And my bond with Lorelei is even stronger. If you’ve read this far thank you! Im writing this post as an exercise for therapy. To share and release. So maybe this year on November 6th I won’t feel overwhelmed with emotions like I usually do. May peace be with you and may you always have lungs full of clean air!! ☮️