Feb 15, 2018 Latest post:
Mar 16, 2018
Welcome to our Caring Bridge site! We decided to use Caring Bridge so that all updates regarding Steph's progress is in one spot and everyone can check in whenever they wish. This will streamline the updating process and everyone will get the same information.
So here's my story:
Starting about 11 months ago, I started to have some headaches. They were minor, infrequent, and not enough to take notice. At the time I thought they were caffeine-related since I had recently stopped drinking my beloved Diet Coke. However, the intensity and frequency of the headaches increased over the last few weeks to months to where I was having them at least 1-3 times per day. I always figured it was a different kind of headache like a tension or cluster headache, but decided I needed to get it checked out. After many attempts to get into a neurologist (with no luck) and an urgent care visit, I decided to ultimately go to the ER to get imaging done and see an on-call neurologist.
On the morning of Sunday, January 7th, I was awoken out of a dead sleep by one of my headaches. This wasn't the first time that had happened, but I had two choices: (1) wait another 24 hours to see if anyone will call me back to set up an appointment, or (2) go to the ER and just get answers now. I decided the most logical choice was to go into the ER. Lucky for me, I was able to walk in and be seen right away, especially since they were recently on diversion for flu and pneumonia. I talked to the ER nurse and doctor about my headaches and how they had been getting worse. My neuro checks were all good, but they decided to send me to CT anyway just to make sure everything was OK. Needless to say, the tone of the tech's voice changed quickly after my CT and I knew something was up. I went to my room where I was immediately consented for an MRI. The ER doctor came in with a much different demeanor, and stated, "I'm not going to sugarcoat anything for you. You have a large brain mass, and I need an MRI to look at it better." The MRI was performed and revealed I had a left frontal lobe brain tumor that measured 7.3 x 5.8 x 5.1 cm. Being a labor nurse, I KNOW how big that is! Aside from being the patient, that's impressive! I met with the on-call neurosurgeon, Dr Dimitrov, who showed me the scans and discussed our plan for eventual surgery. Given how it presented in the scans, he believed it to be a large yet benign tumor. I was given steroids to help with the meningeal swelling (cause of headaches), discharged from the ER, and was to follow-up as an outpatient in his office. Since my diagnosis, I've been headache-free while on the steroids.
In the post-ER follow-up appointment, we discussed with the neurosurgeon our plan of attack. He was going to send my scans to his cohort, Dr Mitchel Berger, at University of California San Francisco. Dr Berger is the chief neurosurgeon at UCSF and top brain tumor surgeon on the west coast. The plan was to get Dr Berger's "blessing" to do the surgery at my hospital in Monterey. However, after looking at my CT and MRI, Dr Berger was more worried about how the tumor is meddled into the speech areas. Because of this, Dr Berger's recommendation then changed for me to have the surgery done at UCSF, a tertiary care center with neuro-specific staff , and where an awake anesthesia will be performed so that I can talk during the surgery. I did a surgical consult with Dr Berger on January 22nd, where we then determined my surgery date would be Thursday, February 15th. Dr Berger believes the tumor is a slow-growing glioma, probably benign, and that I've likely had it "for years."
I have a full day of pre-op procedures on Valentine's Day that includes a repeat MRI, extensive brain mapping, baseline language testing, labs, and a clinical trial that I hope to be a part of that uses a medication to fluoresce the borders of the tumor. Surgery is in the early hours of Thursday, February 15th with hopes to be discharged from UCSF on Sunday, February 18th (or sooner if I get my way). Troy and Sawyer will be with me in San Francisco during this time, as well as family from Wyoming and Oregon.
I have remained first and foremost very objective and positive throughout this whole process. In my eyes, there's no other way to be. I am and will be surrounded by the best team of physicians, nurses, family, and friends out there which certainly makes this journey easier. For that, I am forever grateful.
As surgery and recovery progress, we will post updates on here as we have information.