Sunday, November 06, 2011

waiting.

as a child, i remember waiting for santa on christmas eve. trying to stay up as late as i could to get a peek. only to fall asleep and awake the next morning to what i swore were footprints in the fireplace. as a teenager, i camped outside the famous barr building all night for fleetwood mac tickets. 10th row center. and recently, i muddled through nine months of swollen belly and insomnia for a beautiful baby girl.

but here i am, today, waiting for a metastatic breast cancer diagnosis. not exactly the present i want to unwrap.

rewind to january of last year. i had shortness of breath. a CT scan discovered some spots on my lung. spots that had never been there before. we kept a close eye on them. they seemed stable after 6 months. and finally, 8 years after my original breast cancer diagnosis, i got the ok from my oncologist to try and have a baby. much to my surprise, i got pregnant right away. and i got to put cancer on hold. i didn't even think about cancer for 9 months. it was great. i got to eat ice cream. and go to baby showers. the only scans i needed to think about were the monthly ultrasounds. and those were fun. i got to see my baby girl's face for the first time.

six weeks after my daughter was born, i went back to hospital for my postpartum follow-up and to see my oncologist for a yearly check-up. i glided into the waiting room. photos in hand of my beautiful girl. all smiles.

as predicted, a CT scan was ordered. just to make sure those spots were still stable. i didn't even really think twice about it. it was just an inconvenience. a two hour drive to the city. and something that was keeping me away from my daughter for an afternoon.

the shock hit when i got the phone call that the CT scan was abnormal. nodules had grown. a PET scan was needed. and now an extra worry, my pregnancy medicaid was expiring in three days. and until the health care reform bill becomes active in 2014, it is almost impossible for me to obtain insurance due to my history of breast and skin cancer and pernicious anemia without paying exorbitant premiums and a ridiculous deductible. PET scans cost thousands of dollars. thankfully, my oncologist's office was able to schedule the scan that friday. so another afternoon lost. driving to the big city. and lying on a table with radioactive glucose coursing through my veins.

the following monday morning at 7:30, i got a call direct from my oncologist. the PET scan showed activity. shit, shit, shit! the nodules had lit up. she mentioned a needle biopsy. or waiting and scanning in four months. i don't know. she might have said more but it was all a blur. fog. surreal. she asked what i wanted to do. i had no idea. i needed to think. i asked for a copy of scan reports to be sent to me (like i am an expert?). and i would call her back. a lung biopsy just seemed so severe. and invasive.

i had my daughter with me when i picked up reports from the post office the next day.i ripped open the envelope as soon as we got back in the car. i had read my reports before. they always said "possible recurrence" or "need to be watched closely" or "could be infection" (as a ray of hope). i really wasn't expecting to read that one of the nodules had doubled in size and that the findings "were consistent with pulmonary metastases". no other explanation given. just flat out mets. in black and white. my heart dropped. i looked at my baby girl sleeping peacefully in her car seat. i broke down. tears. sobs. thoughts of not being there to see her grow up. remembering what i had just read about breast cancer lung mets during a google search. how the average survival was 5 years. 5 years???? she wouldn't even be in kindergarten yet! my heart was full of bricks. and there was no air left in the car. i looked back at my daughter. i needed to pull myself together and drive. so i took a deep breath, fought back the tears, and drove home.

after more googling and talking it over with myself, i decided i should try and get the needle biopsy. it wasn't as invasive as i thought. outpatient. and i'd be back to normal activities the next day. so i called my oncologist to schedule. bad news. radiologist did not think needle biopsy was possible. my options were wait 4 months and rescan or talk to thoracic surgeon about possible surgical biopsy. and so my oncologist referred me to a surgeon.

i was really hoping surgeon would look at scans and say that he could do a needle biopsy after all. but unfortunately, my largest nodule was too deep in my lung and still too small to access with needle. a surgical removal would be very invasive and just not a good idea. i would be out on bed rest for a month. and removing just one nodule still wouldn't be a cure. i have multiple nodules and they are in different parts of my lung. so really the only option i have is to wait the 4 months.

why wait? why can't we just start treatment? because we still don't know without a doubt that it is cancer. a biopsy is proof. proof that comes with pathology. cancers can mutate over time. pathology would give us a treament blueprint. and there is still hope that this could be some benign anomaly. and if we started chemo, and nodules got smaller, we wouldn't know if it was due to chemo or by their own b9 ways.

so i wait. i wait until january 23 for my next PET scan. which we will pay for out of pocket and hope that a nodule has grown large enough to biopsy. so that i can be officially diagnosed with stage four breast cancer. and hopefully then, i can receive medicaid (via disability). and chemo. and oh, won't life be good?

or even better, i could get a phone call on january 24 saying that those nodules have mysteriously disappeared and left only a faint footprint in the fireplace.

2 comments:

Dana Smith said...

Stay Positive Larissa.

Laurel said...

praying for footprints...love you <3