As I delve into the blogosphere and start to read other blogs, I’ve seen that many bloggers list their treatment history. It was frankly something I had never thought of, but I really think its great!
So, as best as I can, here is “The List” – the chronology of my cancer chaos:
January – April 2014
Episodes of sensations in my left leg began – My left foot would essentially become numb with electrical-type sensations traveling all the way up my leg. Several episodes, in which the sensations traveled all the way up my left side into my face (Later learned these were seizures).
Thursday, April 3rd – appointment with primary care physician – brain MRI and blood tests ordered
Saturday, April 5th – blood tests, but no results; MRI yet to be scheduled – insurance holdups, of course.
Sunday, April 6th – “Big daddy” grandmal seizure
**Can’t recall the initial consult with my neurosurgeon, but it was around April 10th and later followed by a torturous 2-hour+ functional MRI (A particular scan, which required me to repeat words, move various parts of my body, etc.)**
April 17th – 20th
Initial craniotomy with complete resection of tumor with 3-day admission in the hospital. Discharged April 20th; Diagnosis of Grade III anaplastic ependymoma
May 27 – July 7th – 30 doses of radiation
April 2014 – January 2015
Eight months of physical therapy for neurological deficits on my left side; Spinal tap (Awful!!!); All clear scans
During this time, life eventually seemed to normalize; Returned to work part-time in September 2014; Began to exercise 4-5 times a week and focused on a healthy diet; Became physically stronger than I had been before cancer
February 2015 – Brain MRI began to show “something” – suspected recurrence
February – June 2015
Follow-up MRIs continued to show the same image; Second spinal tap; By June, the image/lesion had grown and recurrence considered “confirmed” (needed official confirmation with pathology report) and second craniotomy scheduled
June 30th – July 3rd
Second craniotomy with complete resection of tumor with 3-day admission in the hospital. Discharged July 3rd; Confirmed diagnosis of recurrence of Grade III anaplastic ependymoma
July – September – 5 Avastin infusions
August 4th – 10th – 5 high-dose radiation treatments
December 2nd – December 3rd
Seen by physician assistant for pain and redness at surgical/radiation site; Admitted overnight for potential infection; MRI and blood work showed no signs of infection
As an aside, I had a noon flight on December 3rd to Colorado – I told every person I encountered that I was making that flight! I was discharged at 9:00 a.m., literally rushed out of the hospital and made it to the airport with time to spare, but with my hospital band still on!
December 28th – December 30th
Reported to UCC for 5-day migraine; admitted for monitoring of symptoms and medication control; MRI and blood work showed no signs of any issue; Resident tried to push a spinal tap, which I outright refused and which my oncologist agreed was unnecessary (Always have to be your own advocate!)
January – March 2016
Mild sensations begin again in left leg; memory appears to be getting worse; referred to Occupational Therapy (OT) and formal cognitive revaluation
March 31, 2016 – Brain MRI shows “something” – undetermined if the image is radiation necrosis or a 2nd recurrence (apparently the image is more diffuse, as opposed to nodular like a tumor); put on steroids
April 2016 – Begin OT for cognitive issues
May 2nd – May 5th
Following pictures I sent to my oncologist and neurosurgeon of my surgical/radiation area, I was directed to report to UCC for immediate admission for a suspected infection and wound breakdown; Titanium plate was actually exposed
Surgery ordered; Infectious disease called in to evaluate; Plastic surgery called in to partner with neurosurgery team during surgery to clear out infection and create skin flap
MRI showed no change from March 31st scan
Steroid taper was completed, unknown to my neurosurgeon
Discharged May 5th to complete pre-surgical testing and for a night at home to “rest” before surgery scheduled for May 6th
May 5th (Happy Cinco de Mayo!!!) – “Big Mamma” seizure in the middle of the night and return to UCC ** Believed that the failure to advise my surgeon of the steroid taper contributed to the seizure**
May 6th – 12-hour surgery to clear infection in the brain, remove titanium plate, excise portion of my abdomen to create a large skin flap to cover area of infection and all of the insane intricacies of finding, moving around and reconnecting blood vessels, arteries, etc. (These doctors are geniuses and I cannot even begin to understand all they did)
May 6th – May 13th
Hospital stay including post-op observation, neuro-observation and standard admission
Multiple, daily doppler ultrasound testing of skin flap to ensure active blood flow and function of the arteries (or, making sure this complex system of the flap, blood vessels, arteries, etc. were working and my body wasn’t rejecting it)
Mutliple, daily arguments over my medications (too annoying and tedious to list) and a complete lack of commincation from the “neuro team” (this nebulous group of residents/fellows/ghosts), who were making major decisions about my in-patient care with NO consult with my treating doctors)
PT and OT evaluations and sessions – out-patients sessions ordered
Discharged Friday, the 13th – Yes, that’s right
TO BE CONTINUED….
Throughout these past two years, my treatment and care have involved scans, medicine administration, etc., but also other practices over various courses of time. These all include:
- Regular follow-ups with oncologist and seizure neurologist
- Regular follow-up MRIs varying from every 6 weeks, to every 3 months, to every 6 weeks again, and so on
- Therapy with psychologist as well as consults with a psychiatrist for anti-anxiety medication maintenance
- Couples therapy with psychologist and social worker (This was a God-send!)
- Cognitive therapy evaluations for multiple issues, including memory loss, inability to focus and multitask, etc.
- Massage and acupuncture sessions
- Exercise and fitness to keep my body healthy, strong and to relieve stress
- Meditation (or as best as I can do it)
I’m sure I’m missing some, but thankfully, I’ve got a LOT of time to update things here.