Due to the pandemic my treatment in NYC has been delayed about 3 months and we finally decided that I needed to make the trip regardless of the covid risk. Since it is a clinical trial, I did not have another option outside of NYC without potentially longer delays. I flew a circuitous route to the city on 5.28.20.
I was having a rough few weeks preceding the trip, losing some visual acuities and suffering dizziness and balance issues along with crippling pain in my spine and hips.
I was anxious to get checked out.
A series of covid delayed events kept delaying local interim scans and blood work so I was flying blind in a manner of speaking.
My gut was telling me something.
On the morning of the 28th I did not feel good about boarding an airplane or navigating my connection but I asked my brother to drive me to the airport and boarded my flight with apprehension.
By the time I reached my gate in NYC I was asking for a wheelchair to get me to the cab stand.
I did manage to check into my hotel but something was nagging me but I convinced my self I could make it until the morning.
Bear with me, I do have a point here.
After an unsuccessful attempt to nap I ended up in the urgent care at MSKCC (my primary hospital) and I presented with a fever which started a covid protocol and was promptly tested and isolated. To these medical professionals credit, the work up on me never stopped.
I was covid negative which did speed things up.
Morphine stopped the screaming pain and I was able to relax thru all the commotion.
At 2:43AM, the resident on duty informed me that I had a mass in my brain it was the likely culprit for my visual and balance issues.
I was surprised but not stunned- a January 17th brain CT showed nothing but I had sensed something for a while.
As I was processing all of this, they began prepping me for surgery- paperwork and physically- there was a neurosurgery team coming to meet me. They were waiting on the results of one final MRI scan and a consult with the radiation oncologist.
At this point I was alert enough to ask “why the urgency?”.
The answer was that the mass had a bloody halo around it and the fear was the bleeding would worsen increasing the pressure/problems.
I swear there is a very important point and an ending here… be patient!
Thru my morphine haze I recalled a conversation from 3 years ago with my Oncologist where we discussed metastasis of my cancer to my organs. He informed me that usually that was not the case except with very late stage events. Plus we discussed the mets in my skull specifically and he warned me that it was far more likely to have issues with a bone tumor pushing on the brain than actually penetrating the tissue. So I asked the question of the resident in charge which pumped the breaks.
The result was an order for another detailed MRI of the brain- which was completed early this morning.
Mercifully I am coming to the close….hang on…
In summary, it appears the tumor is not in the brain tissue, it is in the bone and can be treated with targeted radiation, not whole- brain radiation, or surgery (both of which have greater potential for complications).
True to form, a team, led by a radiation oncologist, is currently mapping treatment plans for radiation to my spine and my skull- we have been communicating regularly around the clock and I start treatment Tuesday for 5 days of radiation. Steroids and morphine have reduced the swelling and pain to buy me these next two days. As long as there are no “events” I will be here thru June 8th or 9th.
Finished! Ta Da! my points are:
1. Listen to your gut/body
2. Don’t try to be cowboy- ask for help
3. Take control of your medical and challenge advice/opinions that appear incongruent or just plain wrong.
4. Pick your medical team and trust your team- and every team has to have a coach and a damn good one- mine is excellent.
Special thanks to my long standing friend (it actually autocorrected to fiend- hmm Siri is a sneaky girl) and Davidson classmate Dave Lennox and his wife Leslie for coming to my aid yesterday and rescuing my worldly belongings and checking me out of my hotel. You guys saved me a lot of useless anxiety.
So, I’m not sure exactly what lies ahead- I have been warned that it may worsen before it gets better but I will continue to fight on.
It is Saturday morning and if you have a spare prayer lying around, I could use it about now.
As usual I have received a lot of lovely thoughts and notes- Thank you and Love to all!