I am claim number 165XXXXXXX. Staring up at the ceiling, I am being wheeled, flat-backed and vulnerable, into a surgery I never in a million years expected to be having. So lucky they caught it everyone said. Yet at this moment, I didn’t feel lucky. Instead, all I could think of was why didn’t they paint the ceilings?
By Dr. Simi Ranajee. Dr. Ranajee is a director of APRA.
I am a female 49-year-old non-smoker (yeah, recreationally in college but does that count?) who was diagnosed with lung cancer. No family history, no symptoms, and no idea. I work for an incredible Medical Communications Company (ACCESS Medical) and have created many patient journey scenarios for work. Everyone on the team would sit in a room, maybe we would have a patient that had cancer, and ask pointed questions to understand and articulate their journey. Stigma? Fear? Etc. Words only minimize the experience. However, until we perfect the translation of emotion through touch or looking in ones’ eyes—It is all we have. I will say that I know many of my loved ones faced similar emotions as they comforted me. My advice during this entails: welcome all the love you can, use technology and question everything.
When I was texting lobectomy to my friend it spell-checked as lovectomy. I thought wow—what a beautiful sign. I will have a huge hole near my heart that I am extracting love from everyone to fill it.
The “lovectomy” was born.
The lovectomy mentality was so needed. No one discusses the amount of paperwork, planning, and healthcare literacy acumen that is required to manage the process.
My sister set up a private Facebook page for me called Simi’s lovectomy. This page was a godsend. Especially at times when I was beaten down or too tired to even understand what was happening. I was able to keep in contact and articulate my thoughts and feelings despite time zones, distance and my lack of ability to speak. My family could communicate my progress, people could share their prayers and support, and at any time (usually my 3 am panic moments) I could feel blessed. No one discusses the depths of anxiety, fear, and lack of one’s own ability to understand what physical and mental changes are occurring to them. The stats were killing me. Here are some excerpts from my Facebook page. (on right and pics).This use of technology along with What’s App, Facetime and others kept me connected to my world.
The connection kept me going because our healthcare system is broken. I am blessed as I have worked in healthcare for 30 years with providers, patients, and payers. I will say that despite my being on disability, I felt like I had a full-time job managing the appointments, medicines, referrals, tests, and co-morbidities I was facing. Insurance denied my coverage 3 times saying it was just a tumor despite pathology reports and a wonderful doctor managing my care. My anxiety should be handled by a psychiatrist as why was I worried? Uhmmm my lung capacity had diminished by 40%, I couldn’t breathe, I flatlined, I couldn’t work, and my entire family was a wreck.
When I started this journey, I went to the head of thoracic surgery at a very reputable cancer center. He described the surgery that he was doing. After discussions with 4 other thoracic surgeons and about 14 other specialties, I was told to “run” from him. Second opinions—get them! You can research, look at genetics, do repeated consults, test, eat and live well, not stress and still without any understanding —-just die.
I am humbled as I know I am here because of skills, education, prayers, love and relationships. My case has gone across the country to Stanford, MD Anderson, U of Michigan, Moffitt, Advocate, and has been discussed with 5 thoracic surgeons, 4 Internal Medicine, 2 Pulmonologists, 1 Cardiologist, 1 Gastroenterologists, 3 Oncologists, 2 PA’s and probably more.
Many have had different suggestions, protocols and care. Even with my understanding of the system, healthcare literacy, oncology and relationships there is still concern. Blessed to be around friends and family. Especially after surgery.
Post-surgery I was in so much pain but there was good news—they got it all out! My voice was hoarse, but that was normal. I didn’t feel normal but was told I would have a “new normal”. Everyone said “You will be fine. You’ll like the new normal.” I liked the old normal better. After weeks of saying I wasn’t feeling normal, I went to my primary, talked to a GI, cardiologist, pulmonologist who had no idea why I was short of breath, hoarse and not feeling well. My mom said why don’t you see an ENT? ENT—how would that help? Well, as usual, she was right. It turned out my left vocal cord is paralyzed, which doesn’t allow me to keep air in my lungs….hmmmmm—therapy or surgery? Time will tell. I thought I was done.
Everywhere I look I can’t escape it. I wear the scars on my body. TV shows, ads, cancer cancer everywhere. PTSD perhaps or just trying to forget. You can’t forget and continue to question. Many of my friends with cancer have discussed the “Why Me?”. No one knows why. But that doesn’t stop the question. Don’t stop questioning. We will find the answer. It may not come from where you think…but it is there.
***Xray was clean
***Pain still present in “non-lobe” (my daughter’s name location) and incision sites
***Pulmonologist and rehab scheduling this week.
***House is Grand Central. Love people in and out and semi-permanent out of towners. Hubby thinks I am nuts so must be healing ?
*** Nervous to leave house without my new “diaper bag” with nebulizer, all meds (nausea, pain, anxiety), peak flow, spirometer and inhaler. Samsara…(cycle of birth and rebirth)
****Flatlined for 30 seconds after surgery so scared to sleep sometimes
****Still sleep sitting up –which you would think my posture would be better
***. Petty shit- People tell me about a bad hair style and just want to scream “I had lung cancer!!!” (God willing remains past tense)
***Quote from friend “Cancer people are different”
***Cancertainly realize I have forever been changed
• I could lay in bed all day if I didn’t have to pee
• Thank God for the meal train—my family is so spoiled
• I am now lopsided
• I think I want a funeral for my lobe
• I can go from laughter to sobbing in 2 seconds flat
• Never had met Xanax now it speaks to me
• Pain is to remind me of this human experience
• Tattoos over my incisions may be cool?????
• Hugging is an amazing healing tool
• Worst time ever, beauty everywhere…
• Not allowed to go out is “different”
• Love the conversations -scared for next doctor visit.
Random thoughts for today:
*Percocet is my new BFF
*Kids were right— showers should be optional and I have no energy to try
*Cancer is hall pass to be anti-social
*Can’t drive or go near groups for 2 weeks then 6-8 week min recovery
*Have pains in areas I didn’t know I had
*Mind says let’s go- body says f@8! no
*Call Oncologist – glad I get the weekend off
*Love that FB can lift you up at any hour …..
*Hope I am able to articulate the thanks I have in my heart for my amazing family and incredible friends
*Love and gratitude ❤️❤️