Unfortunately, Anthony passed away since the last update.
On April 9, 2008 when I was 43 years old, my world changed. After a long Transatlantic flight, my wife Jacqueline and I first dealt with our luggage being lost and then made a long train ride to our destination in the south of the Netherlands.
A couple of hours after we arrived, green lights suddenly started to appear in front of me. First two, then four, then eight green lights, and so on. They looked like the "Eat at Joe's" signs in cartoons. I came around to see Jacqueline and her sister hugging and in tears. Witnessing a grand mal seizure was probably the most frightening thing they ever saw. I was transported by ambulance to the local ER and a subsequent CT scan showed a lesion on my left temporal lobe. In this way, a brain tumor introduced itself into our lives.
3 week later, back in Philly, I was lucky to be connected to a surgeon with a "let's take this tumor on!" attitude. After an aggressive but successful 4+ hour surgery, he removed "all visible tumor" (2-3cm) from my left temporal lobe. Pathology showed that I had a Glioblastoma Multiforme with Oligodendro. I wound up going under the knife a second time, 2 weeks later, because of an infection that lead to a washout surgery. This lead to me having a pic-line in my arm for six weeks.
My radiation got started in the beginning of June 2008, for six weeks. The pic-line was worse for me, but nausea from the radiation definitely knocked my socks off until I discovered ginger!! Chemo started in September 2008 on a 5/23 cycle and then to bimonthly until May 2011. I continue to get an MRI done every 2-3 months. Early on in my treatment we added chloroquine and I still take multiple supplements which may help improve my chances - melatonin, selenium, boswellia, adrenal support, molybdenum, berberine, ultra omega, curcumin and astragalus root.
After the surgery, I was quite aphasic for several months. I could not read or write for about a year. I still have some difficulty, but it is gradually coming back. Because of this, I could not return to work and the possibility of never working again was upsetting to me. I enrolled in a Back to Work program in early 2011 with other people with disabilities. I am set to finish the program this fall and hope I can return to working part-time.
From early on in this journey, I got support from our local Wellness Community – free 'mindfulness meditation' and yoga classes. I try to keep stress to a minimum. I work with a nutritionist who helps me try to stay on track with eating right, maintaining a healthy internal 'terrain'. When I'm not at classes, I volunteer, go to the gym, help-out friends, babysit, do garden work, and enjoy connecting with neighbors and friends more than I ever did before diagnosis.
It is now 4 years and 4 months since my diagnosis. Who knows why I've been so lucky. Attitude? Love? Eating right? Exercise? Surgery+Radiation+Chemo? Supplements? Reiki? Multi faith prayers from around our world? Being connected to people? Taking one day at a time? The Butterfly Effect? All of the above? I just don't know. But I do know that I am grateful for today and that I couldn't have made it this far without immense help from friends, family, doctors, nurses and above all Jacqueline.
Update: 1/28/2013
Anthony's last MRI in Dec 2012 continues to show "no changes; no signs of visible tumor". We don't want to be greedy but we hope that 2013 will bring more of the same for us and for you!
Update: 8/18/2013
Be it good or bad news in this BT journey, I am overjoyed to have this amazing group to tell my news to. I had a relatively drama free run for 5 years with my tumor, until a recurrence was detected in May, 2013. My doctor recommended 6 cycles of chemo (TMZ) and the result was swift and encouraging. After just 2 cycles, my MRI showed that the tumor had significantly shrunk.
I cannot keep up with the number of thank yous I owe my wife, Jacqueline. She has been: awesome, fabulous and KEEPS ME ON THE HEALTHIEST PATH POSSIBLE. I try to maintain a healthy diet (which doesn't always happen when I'm faced with cake, cookies etc!) but other than that and getting older, I have been fortunate and continue to stay in good physical shape. Emotionally, I can only say that I'm on a roller coaster. At times I feel like I'm falling of the tracks, sometimes it's like I'm the driver. One day at a time my friends, one day at a time.
Update 3/18/2014
A small recurrence was found on Anthony's MRI in May, 2013. He initially responded very well to Temodar and for a few months there were no signs of visible tumor on his scans. In October, however, the tumor resurfaced and we made the decision to get another surgery. We travelled to Cedars Sinai in LA for surgery (Jan., 2014) and for Anthony to be enrolled in one of their vaccine trials. Surgery went really well but unfortunately the recovery did not. We basically got stuck in LA for nearly 2 months (horrible reaction to steroids; followed by horrible taper; then he got an infection which - thankful for small mercies - did not require a pic line this time). But finally, everything got stabilized and we were able to return to our community in Philly. Anthony is now doing really well and has made an almost full recovery to where he was pre-surgery #2. He is enrolled in a vaccine trial at Cedars and has completed the first of 3 vaccines (March, 2014).
Update 10/26/2014
Anthony completed the vaccine trial in mid April but, disappointingly after the last injection, he started experiencing small olfactory (foul smell) seizures. The subsequent MRI showed a large area of enhancement around the tumor cavity. He started biweekly infusions of Avastin at the end of April and was soon back at the gym, yoga, all his usual activities. We had a fabulous 50th birthday party for him in early June and he was almost as good as new so we were sort of shocked to learn from the June scan that the tumor had continued to grow through the Avastin, though it was clearly helping with swelling and edema. He completed a ten day radiation boost in July, and will start an older line chemo, in addition to the Avastin, in the next couple of weeks. Radiation has made Anthony very tired, but his energy has started to improve a little bit.
We are heading back to the West Coast again this week, only this time we are going camping with friends, not spending our precious time at Cedars Sinai! Anthony continues to amaze everyone who knows him, with his extraordinary resilience and his incredible ability to live each moment, as long - and as well - as he is able to.
Yes, time is precious. The old cliche that we learned early in this journey is as relevant today as it was six years ago -we continue to hope for the best and plan for the worst, knowing that every moment is an irreplaceable gift.
Update 2/2/2015
Anthony is still doing quite well, despite numerous assaults to his body over the past year. We recently acknowledged that it has been a full 12 months since his second surgery on 1/2/14. It has been a difficult time with a lot of loss along the way, but also many very special moments.
He completed ten rounds of radiation in July and then started CCNU (every 6 weeks) in September last year. This combination has left him extremely fatigued, which means that he sleeps a lot more than he ever has before. But with assistance, he is still fairly independent and enjoys a good quality of life outside of that. He goes to the gym a couple of times a week (though the ratio of work : hot tub time has significantly shifted ;). He still goes to yoga, acupuncture and hangs out with the neighbourhood kids throughout the week. We spent a week in Paris in September and saw family and friends while we were there. And enjoyed many meaningful times over the past months and especially around the holidays.
As time goes on, things feel increasingly shaky. But every time I prepare myself for the worst, he seems to turn a corner. He is a miracle to all of us who know and love him.
