I'm updating the main story as not everyone gets to see the updates that are posted ... the integral message of love is still here. A story of a valuable life being threatened on mumerous levels & community support & community action having contributed to saving this life, and adding to the recovery experience.
An end of July 2017 update:
Greetings, Friends, Family, and all....It's now mid summer 2017. Time for an update.... The calendar shows that in a few weeks we'll be looking at the 2 year anniversary of my diagnosis. A diagnosis that included.... HCC - Hepato Celular Carcinomas, PNET's Pancreatic Neuro Endocrine Tumors, a mass forming on & near my spleen, scans also showed 3 unique kidney stones on my right side & 2 more in my left kidney, my intestines were infected with the C Difficile Virus, and along with all of this I was also suffering the pain of Pancreatitis...
Treatments for the kidney stones became effective, treatment for the cancers... included a very long 12 hour surgery, followed by chemo therapies, followed by radiation therapies... we were stunned by one report which indicated aggressive growth and metastasized tumors - essentially new tumors were appearing and those that had been identified were growing. That was frightening.. lots of digging, questions, prayers & more prayers.
I left work in May of '16 ... the cognitive struggle of being a professional without a profession... having to figure out how to live with out an income has been on going. Disability does not provide for much.
On the technical side the last MRI report reads like this 1. Multiple hepatic metastasis are stable. (at last count there were 12 tumors nesting in various sections of my liver - some of these HCC Liver Cancer the others PNETS having come over from my Pancreas) 2. New mass medial to the spleen reflecting either a infarcted splenule or metastasis. (The oncologist says he's watching this I need not worry - yeah OK)
The funds raised through this campaign have helped us beyond the ability to pay bills. Core security. Being able to demonstrate financial responsibility to the people who provide services, substances & treatments to both me & Harrison has made it easier for us to show up & be present for the treatments. It may seem so simple...when I went from being able to pay my obligation to not having the money in my account...to pay the smallest bills...fear. Insecurity, doubt, unknown....it was more complicated emotionally than I expected.
Where are we now? I am taking this as good positive news and I am grateful that God has seen fit to continue with me...
...we are in mid 2017 and I can report that having received 2 MRI studies which are indicating general stability I am listening to my inner dialogue that is asking me to figure out how to test returning to work, to move ahead with life from this point... I'm feeling a bit lost and will need some help from the universe here. There are several moving pieces, my economics are fragile and that leaves little room for error.
Trying to make decisions on how to live life in chunks of 90 days (outside of the One day at a Time rule); stability is a good thing. My current state of stability - I've chosen to take with a smile and attitude of gratitude. So much has changed and that leaves me with a desire to rebuild or better yet to build upon where my life is currently at....I understand that I still have cancer and that there are over a dozen tumors on my liver and a mass growing near my spleen and that sounds horrific in its own way...but I'm here and I have the spark of life in me and I want to live a good life. I don't always know exactly what that is but I'm grateful to still have however many days I'm supposed to have to work out the meaning. We are all counting days and i'm grateful that so many of us are together in this community.
Love to you all. Breathing deep. I embrace all in my life. I am grateful for the opportunity to experience. To think, to feel, to live, laugh, cry, pause, pray, & move on.
With love & much gratitude, Joel
The original story:
My name is Joel Naftelberg and I am fighting a battle with Cancer(s), beating Cancer, and pushing back trying to find a new life after Cancer has altered ever aspect of my life. From my physical health & spiritual well being to my battle with medications and addictions, through the changing landscape of being without a profession, job or income. Having to cope with the illness of my son, my own treatments for basket full of disease & illness, having to move our place of residence being forced upon us... we needed to find a new home, pack & move within the fluid madness of our daily life.
Is anyone ever really prepared physically, emotionally or spiritually to fight this kind of battle? I am a cancer patient and have been put into the position of needing to ask for help.
In addition to my diagnosis and beginning treatment during the summer of 2015, our family was beginning the process of coping and treating my 15-year-old son's diagnosis of Crohn's Disease. He is being treated at Morristown’s Goryeb Children's Hospital, his infusions continue every 7-8 weeks.
In September of 2015 my entire existence in this life took a turn. I was diagnosed with dual cancers: Pancreatic Neuroendocrine Tumors and HCC Hepato Celullar Cancers. On October 30th 2015 I was waking up from twelve hours of surgery removing cancerous tumors from both my pancreas and liver.
Within 45 days of my surgery, both cancers had returned to my liver. The PNETs had metastasized to my liver, rendering me unable to be listed for organ transplant. Chemotherapy started in January 2016 and continues with a daily pill regimen and monthly injections. With that comes a long list of side effects that add to the physical discomfort. Horrific radiation therapy started in October 2016; 60% of my liver was treated, the balance is on hold.
One of the greatest challenges has been the uncertainty, the great unknown.
It became necessary for me to leave work at the end of May 2016. Disability income covers a fraction of our expenses for living, housing, health insurance, food… the basics…add to that the costs of medical copayments and treatments. I am powerfully aware that having cancer is impactful on so much more than the body, the mind and the spirit. It is also a personal economic war on our family.
I have now lost my income and ability to provide; losing our living space is within sight on the horizon or not being able feed my family is a very real possibility. It’s impossible to think about fighting cancer when I am facing this kind of worry.
I’ve set up this GoFundMe as a way for all those who have graciously offered assistance, to help….family and friends have been amazing. If you can help us, please do, knowing that every day I breathe, I will be grateful. I ask that you share this in case someone else, anyone else, can help. I love my life - what it was and even what it has become. I hope to have the chance to pay it forward and will never, ever forget your gift...
With continued growth of existing tumors and continued discovery of new tumors, I am looking at alternatives: meticulous diet regimens, specific supplements and organic food based treatments. I am doing my part with exercise, prayer and meditation regimens, exploring acupuncture and adding Yoga to my daily routine.
I am hopeful that by March 2017 we will see evidence of radiation therapy working, if so, I will consider continuing and treat the balance of my liver with Y90 radiation in the hope that it will suppress tumor growth and, better yet, shrink what has already grown.
Some days it feels like all this is happening to someone else and then I become clearly aware that all of this – the cancers, the treatments, the side effects, the economic stress – is happening to me. There are days when tying my sneaker laces is a challenge, days when I’m sad beyond belief mixed with days that I’m ever so grateful because I know and have witnessed how much worse this could be.
My journey to ‘normalcy’, remission and recovery remains complicated. I am renewing my acceptance of life on life’s terms one day at a time. I am trying to accept these massive life changes with my head up, fighting hard, and trying to make my family proud and try to establish a legacy we can all be proud of.
Presently my treatment is ongoing with Hackensack University Medical Center and I am asking for your help. This is one of the hardest parts; asking for help is never easy.
If you've read this far, I am so appreciative and I'd like you to know something else about me....
In the community service space, for the past five years I have been an organization leader for the UUCM MESH Cafe and for the past two years a member of the Board of Trustees for MESH Inc. www.meshmontclair.org
Montclair Emergency Services for the Homeless (MESH) is a local, faith-based organization dedicated to engaging the Montclair community to provide basic and essential services to Montclair’s most vulnerable homeless and hungry.
UUCM is a MESH partner and each week serves 60-70 homeless and hungry neighbors a nourishing meal in community, distributes clothing and health and sanitary aids.
During my service the UUCM Cafe has grown from a breakfast transition with 4 or 5 volunteers to a regular meal service supported by 20-24 volunteers; local HS groups, and local businesses. We provide advocacy for & direction to some of the neediest members of our community along with educating our volunteers to the needs of neighbors and the real face of poverty, substance abuse and homelessness.
I'd like to say thank you & express my gratitude. Words alone don't adequately express how filled with love & gratitude my heart is. The response to this campaign has been extremely strong... if there is ever a way that I can return the love & support that I am receiving, please know that I will.