For those of you who are not aware, Rob has been diagnosed with end stage cancer which has metastasized to his bones. We have using this CaringBridge website to keep family and friends updated in one place. We appreciate your support and words of encouragement- thank you from the bottom of our hearts.
Rob's illness came on out of nowhere and has progressed so much faster than any of us could have imagined. Up until Fathers Day, he was playing golf 3 x's a week and we were getting ready to move onto the boat for the summer. Then he started to just not feel right- very tired and some upper back pain which he thought was a strain from not warming up before golf. . . By July 1, he was in debilitating back pain and getting in and out of bed was excruciating. His blood tests showed an increase in inflammation factors so his doctor put him on steroids, which helped for a bit. He had an MRI on July 16 and his doctor called right away to say that the MRI showed lesions on his hips, ribs and spine and suggested he go see an oncologist right away. Susie was able to get us an appointment with Dr. Avento (her amazing oncologist for over 20 years) on the 18th. By that day, he was already so weak that getting from the car to the office was a major deal. He was unable to walk more than a few steps without being out of breath. Dr Avento sent up to the hospital for a CT scan to rule out any embolisms. The CT scan was clear for embolisms but showed more bone metastasis but nothing explained the shortness of breath so we ended up in the ER. They ended up admitting him.
At that point, we made the decision to have Abby come home. She had been doing an amazing internship on a Native American Reservation in South Dakota living and working in the woman's center and shelter. While he was an inpatient, they did a PET Scan which lit up throughout his bones and in his esophagus so they did a endoscopy to get a biopsy. They discharged him from the hospital 3 days later and we moved into Susie's beautiful cottage. He was still able to get around a bit on his own with a roller walker so her place was perfect since it had been handicap readied by the woman who lived here before her. Susie has been absolutely AMAZING! She gave Rob her bedroom and slept on the couch, She's been doing all the cooking and has been a ROCK helping us navigate this crazy road!
The pathology from the biopsy showed "adenocarcinoma poorly differentiated. Appears gastric or esophageal in nature (behaves like a stomach cancer)." Our next step was a bone biopsy and then to come up with a treatment plan. I think the hardest part was all of this time during testing: waiting for a diagnosis and prognosis. I (Theresa) felt from the very beginning in June that something was really wrong, that "his battery" was running out of juice. I really felt like whatever this was was going to be fatal and fast.
The bone biopsy was inconclusive for cancer and had all of the doctors puzzled. They did another one last week but we still have not gotten those results. Dr. Avento's original plan was to do chemo and hopefully immunothearapy . He let us know that that even though the chemo would not cure him, there was a chance that it would lessen his pain and give him more mobility. We all agreed to this plan but wanted to go Block Island for a couple of days to be with our friends who we have spent the last 15 summers with. We were supposed to be there this Mon -Thurs (Aug 6-8) and then he would start chemo the following Wed (Aug 15) but by Sunday it was evident that there was no way he would be able to manage Block Island, which was an incredible disappointment to us all! We sent Abby over on her own and it was so great to know that she was enjoying time with our friends. The photos made us all so happy!!! We were able to have a great phone call where everyone was able say hi to Rob!
Monday afternoon Dr. Siska came over she saw how much things had progressed and we discussed options. She said she would discuss with Dr. Avento the oncologist who called us that night and said that his opinion was that chemo was no longer an option. Dr. Avento said it would do more harm than good at this point and pain control and comfort is the best way to proceed now. He called hospice for us and they were here yesterday (8/7) and they're coming daily. It has provided us with a lot of comfort to know that we will have a lot of support.
We are so grateful to all of our family and friends who have reached out to us with kind words and offers of support! We will try to keep everyone updated as we travel this journey in LOVE with Rob.....
Anyone who knew Rob knew that he was a "man with a plan." He spent the last 10 months planning the Antigua Barbuda Hamptons Challenge Regatta - THE Premier East Coast Amateur Sailing Event! Because he was such a great planner- everything is in place and the race and the awards party are still a GO! Sailors from all over will meet on Sat morning in Sag Harbor to compete for the grand prize- an all expense paid trip to Antigua to compete in the 2019 Antigua Sailing Week! The Award Party follows - under a tent at Havens Beach in Sag Harbor from 5-8pm. The party is also a fundraiser for Theresa's non-profit organization i-tri. It will feature Caribbean food, a live steel drum band from Antigua, wine and beer. We would like to invite all of you to join us as we send Rob out in style and make this a true celebration of his amazing life! Just say you knew Rob when you get to the door and make a donation! Looking forward to seeing you on Sat.!
For more info go to www.antiguabarbudahamptonschallenge.com
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