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.
I stopped writing for many reasons, but to be fair on myself, I had multiple health issues that arose. Did I lose focus? Yes. Did I have any drive to write? Not really. I did continue telling my story, but at speaking engagements, charity events and even some podcasts.
- After my May 2016 surgery, I had hoped and prayed that I’d never see another operating room. I was VERY mistaken.
- I became very depressed after that surgery. A 1/3 of my scalp was my stomach and I was and always will be completely bald on that part of my head. My stomach had a huge scar from where they had taken the graft, so I was constantly reminded of my condition. At least before then, I could forget about having had two bouts of brain cancer. Now, every time I got dressed I looked down at that massive scar.
- My mobility and strength on my left side progressively worsened. I was forced to wear an AFO brace on my left leg, I.e. no more high-heels, or anything remotely pretty. It was sneakers only. I walked with a very noticeable limp and still do.
- I fought it for so long, but I was forced to start using a cane. I don’t need it 24/7, but damn, I hate that thing.
2017 may have been the worst year of my life. The “highlights” included:
- Yet another surgery in which they found 3 separate bacteria in my skull bone;
- A full month on a 24-hour portable IV of an antibiotic so strong it turned my skin grey (my infectious disease doctor literally said, “I cannot believe you made it a full month on this!”)
- My dear friend passing away from brain cancer.
- Hospitalizations in 4 separate institutions for uncontrollable seizures and acute rehabilitation to recover from the havoc those seizures wreaked, including significant problems using my left hand. So, even if I wanted to type, I was physically unable.
- Over 6 months of steroids, which made me gain over 20 pounds. I’m an extremely petite 5’2 woman, who at almost 40 years old I can still fit into my prom dresses. Those extra 20 pounds were insane and cost me serious money in having to buy a brand new, very unwanted wardrobe!
- Around Thanksgiving of ’17, my oncologist was convinced my tumor had returned, although the tumor board had mixed feelings. My holidays were spent sending my records to the top neuro-oncologists in the country, as well as in-person meetings with many of them. No one knew the answer. I just had to “wait and see” what the next scan in January of 2018 showed.
- Thankfully, the scan showed that the suspect area had shrunk and everyone breathed a bit easier that it was just good old radiation necrosis. Yay! 😒
- I was again hospitalized for my seizures, while my doctors tried to find the right “cocktail” of meds. We’re STILL working on that one!
- It seems I can only have a month or two without another catastrophe. Just before summer began, my favorite season if seasons even exist anymore, I began losing my balance and falling constantly. Although I had been working so hard at PT and OT, at this point everyone agreed it was no longer safe for me to travel for therapy. I was “homebound”, only “allowed” to leave my apartment for doctor’s appointments.
- I had to get a home health aide assigned to care for me. This overly independent girl was less than pleased by this situation. Thankfully, I was assigned a wonderful aide.
- Since I couldn’t travel to my hospital for my regular PT & OT sessions, I had to receive services at home. My home PT was not fantastic, but my home OT therapist was incredible.
- During this “period”, I underwent a few infusions of the only drug (apart from steroids) to treat my necrosis, the root of all these issues. The drug, Avastin, is known to cause bleeding as one of its major side effects. Well, let’s just say, for 6 straight months I bled, and bled, and bled. I had to see OBGYN specialists, a hematologist and ultimately needed iron infusions because now I was severely anemic.
- Thankfully, the Avastin did ultimately shrink the necrosis back to my baseline. Hooray! I could return to regular PT & OT! I was no longer “homebound”. Of course, yet another summer had passed me by though.
- The year was coming towards a close, when we got the news my Aunt in Ireland was severely deteriorating from MS (Multiple Sclerosis). Now, all my family apart from my parents and one cousin are back home in Ireland. I wanted to hop on a plane immediately. She had battled her diagnosis for about 40 years. I didn’t want to say it, but deep down I knew it was the end. However, I listened to everyone who believed she’d pull out of it. She had so many times before…but I couldn’t shake the feeling that this time was different.
- Just days before Christmas, she passed. I woke up at 4:00 am on Christmas Eve to watch the funeral service over the Church’s videocam. The day after Christmas, I was on a plane back to be with my family. My Auntie, who had fought a neurological disease since her early 30’s, was gone. I pray I will always be as strong as she was.
- With the end of 2018 being so deeply upsetting, thankfully I had a girls’ trip already planned to the Caribbean. God, did I need the sun and the beach! So, 2019 began on a good note with that trip. It would not last long…
- By March, I was again falling, losing my balance out of nowhere. Despite numerous consultations with top doctors, and my best attempt to avoid it, Avastin once again entered my world.
- After just ONE infusion, in the matter of a few days my pristine, perfect skin flap developed a wound. The wound went deep enough to expose my skull.
- Avastin can prevent healing, so surgery to close the wound had to wait months. We had to ensure the Avastin was completely out of my system.
- Literally on the 2-year anniversary of my friend’s passing from brain cancer, my plastic surgeon confirmed that surgery would have to be scheduled. I cried and cried, explaining to my doctor how hard this day was-not just hearing that surgery No. 5 had to be scheduled, but that it was the anniversary of losing my friend. He understood and left the exam room reassuring me it would be “okay”. As my husband and I were gathering my things, I was talking about how unfair it all was. Absolutely out of nowhere, the sink began running! It was my friend there reassuring me that it would indeed be “okay”.
- My original neurosurgeon had very deservingly retired, so I had to put my trust into yet another surgeon’s hands. Although my plastic surgeon would lead, neurosurgery also had to do their “thing”. Yet, we still weren’t sure exactly what that would entail until they opened me up!
- In June, yet again I found myself in the operating room. 5th time’s a charm!
- Thank God for my hospital and my incredible surgery teams. Neurosurgery learned their quickly after my plastic surgeon excised the wound. Apparently, a piece of my skull was “floating” unattached to the rest of my skull. It was “nonviable”, greenish in color, and full of holes (like Swiss Cheese). My actual brain thankfully looked perfectly healthy. So, easy peasy! They closed me up and despite a disagreement between the surgeons, my plastic surgeon made the final call. I was released that night!
- Ah, but this is me and the positives don’t last very long. I began to once again lose my balance and fall countless times. I lost all use of my left hand. Worst of all, I lost any and ALL of what independence I had left. I had to be “watched over 24/7, in case I’d get up and crack my head open.
- on Halloween, what’s become one of the worst days in NYC, I wound up in Urgent Care after a particularly bad fall. While the nurses discussed their plans for the night, I laid in my hospital bed because I was officially admitted for observation. At least, the nurses were kind enough to wheel me into their private room full of candy! Trick or treat!
- I guess just to make up for no surgeries in 2018, I underwent 2 in 2019! On December 5th, I underwent a bur hole craniotomy, which involved inserting a needle into my brain to drain fluid, which had yet again created overwhelming swelling inside of my skull. So, once again I was headed to the OR. Although they were able to draw out all the fluid, it returned in less than a week or two.
- So, in January 2020, I face my 7th surgery to place a sunt into my brain that will extend down to my stomach area so the fluid can continuously drain and just be absorbed by my body.
I’ve now undergone 6 surgeries with the 7th drawing close I still suffer with my epilepsy, having at least one seizure a month. I’m not yet back in PT & OT working hard to get stronger. Importantly, though, I’m back to writing as best I can!