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My story is not so ordinary and from what has been discovered, my tumor is not so ordinary as well. I haven’t come to a place where I want to befriend this intruder. Rather I am looking to evict this thing as fast as humanly possible. Here's my story:
As far as I can tell, this saga started back in 2020, although the intruder (a nerve sheath tumor) probably has been making a nest in my lung far earlier than 2020.
Right after COVID-19 made its debut, I started to notice I was experiencing shortness of breath when taking walks with the kids. I honestly chalked it up to my age, being out of shape, wearing masks, maybe having an undetected COVID case, and entering into the lovely peri-menopausal/menopausal stage of life. It’s amazing how many ways a women will dismiss signs of something being wrong in their internal world. I kept saying “I’ll get to that eventually”. I used to pride myself on how in tune I was with my body and my psyche and then life got busy, the kids needs and priorities became more important and the necessity of marching forward superseded my internal compass. (Don’t worry, I’ve had a few talks with my therapist about this one.)
I did not completely ignore the shortness of breath. I took steps the past 3 years to address the concerns but it was never “bad enough” to worry too much. Approaching a family trip and imagining taking luggage and kids through a crowded airport and all the other details that ensue when traveling, I decided that I needed to take a more aggressive approach to understanding what was happening with me. To be quite honest, I was starting to worry that something was wrong with my heart. My dad died at 57 from congestive heart failure and he didn’t know he had a heart three times the size of a normal heart. I really worried this might be me and went forward with a stress test.
I didn’t fail my test but I did have a blood pressure that was in the 219 range while exercising. Something was clearly wrong. My Dr ordered a chest X-ray (I had no inclination that it was necessary). Little did I know I was performing a stress test with a collapsed lung.
Three days before getting on a plane for my nephews wedding in Florida, I got a chest x-ray. I pride myself on being a good reader of others emotions and the x-ray technicians expressions were beyond worrisome. He asked me to wait because he needed to speak to the Radiologist, then, with a shaking voice and eyes popping out of his head, said it appears I have a plural effusion and something else that seems like it’s been around for a while. That was it. He said to follow up with my Dr who would be getting the results in about 30 minutes.
After talking with the nurse at the Drs office, we decided waiting to see a pulmonologist was not going to cut it with regard to figuring out what was happening. Upon closer inspection, the report included that I had a collapsed right lung. So off to the ER I went, all by myself. The triage nurse was politely and directly telling me I’d be waiting a while for a bed after I told her I had a collapsed lung, then she pulled up my chart, saw the images and did a quick 180. You know that part where I can read peoples faces pretty well? Well, I knew something was seriously wrong despite her polite smile and calm voice. She had an IV in me in less than 2 minutes, an EKG hooked up, a doctor in the triage station who’s eyes were widening as he looked at my images, a wheelchair and bed within 10 minutes and a CT scan within an hour.
My sister Debbie was on the phone and my dear friend Karen Wilke texting with me asking to come be with me. I obliged. I knew within an hour of the CT scan I had a tumor in my chest larger than a grapefruit. Then came the fluid drain. They captured 3/4 of a liter of fluid from my lung. 5 hours later I was leaving the ER with Karen and my bestie, Neil (a radiology tech himself), and preparing myself to cancel my trip and thinking I would by dying soon. It’s really hard to not be writing your eulogy in moments like these. Joseph, I’m sure was preparing himself to be a single dad in these tense hours as well. The next morning, after evaluating all the details and realizing I have been living this way for years, we decided to venture off on our trip regardless of the newly discovered intruder. I’m so glad we did. It was an amazing trip with my whole family. Then comes the protective instinct to not share details with the kids yet give them enough information so we can all be safe around me and watch me. They seemed to be handling it well.
Upon return to Seattle, after a nightmare travel day and requiring a wheelchair assistance in the airport, we met my thoracic surgeon, Dr Bograd, and Pulmonologist, Dr Gordon. I had to face the possibility that I have cancer and make a plan for how to proceed forward and to gather as much information as possible, and face the reality that regardless of diagnosis, the intruder has to come out and there will be major surgery on a vital organ.
The next day I had a biopsy that was far more intense than expected. Turns out finding veins for IVs is hard when one is dehydrated. 4 tries later they found one with an ultrasound machine. Then there’s the grueling process of the wait. Thursday May 4th at 5:30 pm I got a call from Dr Bograd and to my amazement, joy and disbelief he said I have a benign tumor!!!!!!!
What I have is a Schwannoma. Crazy word! I used to have a childhood best friend who called me Schwa! What a coincidence! A Schwannoma is a nerve sheath tumor. They are benign slow-growing tumors arising from Schwann cells of the nerve sheath. They are very rare in lungs. It comprises 0.2% of lung tumors.
So what’s next? I have a PET scan scheduled. Then I have 2 MRI’s. One for my chest and one for my bones. For Schwannoma's, MRI's give the very best information for the Dr's. I will have a lung functioning test, meet with both Drs, drain my pleural effusion and make a plan for surgery. These are crazy times. Never in my life could I have imaged having a lung tumor. I’m not a smoker or a drinker, but here I am with a lung tumor that is humongous.
I thank you all for the love and support and am appreciative of all that people are doing to care for me and help me through this scary experience. I will update this page as information comes in. A "go fund me" site is being created. I will likely not be able to work my full time job or my private practice for a while and we will need some help getting through this time. Other ways to help will be included as well.
Attached is a photo of my lungs. The tumor is on the upper left side. It is the large oval shape. The dark U shape underneath is my compressed lung, and underneath is the plural effusion.
Today marks 6 weeks since my surgery and 11 weeks since diagnosis. I am now clean from all medications minus Tylenol and ibuprofen. I wasn’t prepared for the latest obstacle which was weaning off pain meds. I am a strong woman with a lot of will power and determination and this one was brutal. I felt like I had the flu for a week. I also had to just sorta guess when I was ready to get off of them. Thanks to the mean pharmacy tech, it jump started me into action. My doctors and home healthcare providers didn’t prepare me for this transition. Thank you to my sister, Debbie, she walked me through how to detox and wean off.
There are so many reflections: such as the empathy I feel for addicts and what got them there in the first place, the privilege I have to even be able to reflect and ask these questions in the comfort of my home and belongings, how does one trust that the pain will not get too intense, how do you sleep after being used to pain meds lulling you into a land of numbness and comfort, how do you distinguish flu symptoms from surgery pain, and why the hell did my other aliments have to come back (foot pain and sneezing)? And so many more.
Overall, I am continuing to make progress. Going off pain meds made me feel like I was taking steps backwards both physically (I can feel so much more than I had) and emotionally. Each day gets better though and yesterday I did more than I have done since the day before my surgery. I have started to drive again and soon I will be able to swim in the pool with my kids.
Summer is wonderful but it’s a weird adjustment back into full time parenting. The kids are busy at the pool with swim lessons and tennis lessons. Then it’s Volleyball and Pacific Science Center camps and hopefully a trip somewhere before the school year starts back up and Erica starts middle school. Alder did a nature based camp last week that I wish he could be in every day this summer. This boy has taken to his name. Joseph has been able to breathe a bit better now that I am more functional.
I want to add some more “thank yous”to this post. My dearest friend Neil who is currently over in Europe has been so fabulous and wonderful and supportive every day. He brings me tons of love and emotional support. He has known me so long, there aren’t many barriers to our friendship. Thank you, my friend! ❤️
There are so many people who have offered so much love and support and to all of you, I draw on that love and support every day. I have really needed it.
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