As many of you know this has been a tough late summer and fall.
Now that we have a clear diagnosis and plan we are starting to tell our friends and family what is going on.
We had a delightful lunch with Adele a friend and supporter.
testifying before congress on cameras in the courtroom.
preparing for surgery to replace the stent in his airway with a longer one before chemo starts.
More info on this journey.
In late July of 2014, Mickey had been dealing with a persistent cough. It was diagnosed as bronchitis and possibly exposure to a virus from birds or bats. Weird but still, since Mickey is NEVER sick we went along took the antibiotics and then steroids. It didn’t improve and the cough at times was so severe that Mickey was chocking. At the same time, Mickey had a thing that looked like a mosquito bite on his forearm, his dermatologist thought is was nothing but at Hannahs urging it was removed and biopsied. It came back as amelanomic melanoma. This meant a quick visit to Roswell Park Cancer Institute for further tests and treatment. The diagnosis was Stage IIIb or IIIc Melanoma. The Melanoma specialists at Roswell Park made a plan for surgery the next week. They removed a large, 7in x 2 in x1 in (yes inches) chunk from his forearm, the sentinel lymph node in his elbow and three in his armpit (two of these lymph nodes had microscopic metastatic melanoma). During this procedure he was that rare person who coughed during Anesthesia. So a CT Scan was ordered of his lungs. They discovered a mediastinal mass in his chest that was impacting his airway. Surgery was scheduled quickly to place a stent in his airway and bronchial tubes; and to attain a biopsy of this mass we now call Harvey. An attempt to gain a biopsy during that surgery was unsuccessful because of the severity of the blockage of his airway by the mass, less than 20% of his airway had been open. The stent was a lifesaver. Yes, he went to Washington DC, the next day for a meeting on drones and news-gathering. One week later a mediastinoscopy was performed to get a bigger biopsy of the mass. This was his third procedure in three weeks. All the concern for the Melanoma in his arm and lymph nodes were put on hold (we hope it also agrees), while we figure this new “life threatening” mass out. The predictions were dire, melanoma or lymphoma the doctors said lets pray for lymphoma. Mickey said. “I hope it is neither.” he got his wish. It was diagnosed as possible Castleman’s, a rare auto immune disease. This took us on an odyssey to find doctors familiar with this disease and to make a definitive diagnosis. We went to various experts here in Buffalo but no one had experience with Castlemans, then to Johns Hopkins in Baltimore, and to the University of Arkansas for Medical Science(UAMS). Little Rock was our place of discovery; after three days of testing it was confirmed, Unicentric Castlemans disease. In most cases of Unicentric Castleman’s surgery is the best treatment. BUT because Mickey does every thing to the highest degree the mass is too large and surrounding to many things (like his aorta, pulmonary artery and vocal nerve to name a few) to do surgery. So we are trying 8 weeks of chemo to shrink it. Then possibly surgery, AND then we will go back to addressing that Melanoma. It is a relief to finally have a plan. We started the chemo 12/5. Just two days after he testified before congress on the importance of cameras in the courtroom; a day after having surgery to replace the stent.
What I have learned through all this is that Mickey has the resolve of a saint. He has remained upbeat and driven. This has not once impacted his work that he is so passionate about. Often taking calls from photographers as he is being wheeled to surgery and he is back on conference calls minutes after arriving in the recovery room.
However; he also has taken this “illness” / diagnosis very serious. He has much to live for and celebrate. His son was recently engaged; his daughter is expecting the first grandchild.
We are both thankful for each sunrise and for our families and friends and especially for each other. We laugh often. This has been a difficult journey but we both have faith and hope that this will soon become a memory and we will continue to laugh often.
Mickey swears to get better! The start of an 8 week chemo routine to shrink “Harvey”.