Looking back at a few of the experiences, amazing institutions, nurses, medical specialists, caring people, and medical machinery that you simply have to trust because you couldn't possibly grasp how it does what it does. But, that's easy, when you have no other options.
As noted somewhere on the blog, several very highly respected doctors at the best medical institutions in the world suggested it would be good to write about my experience. I figure why not. I understand why many dealing with cancer prefer to retain their privacy, I can see why.
In my case, I too find it an amazing series of events that allowed me to escape inevitable.
I am happy to tell those close to me, circle of friends of my constantly changing medical situation. In August I was consumed with anticipation of 3 different cancer tests.
September so far, I feel pretty good. While doctors and tests are a constant in my world, it actually feels like a big weight has been removed from my noggin. I'll take regular problems.
Anyway....
I remember seeing noted melanoma specialist Dr Hodi of Dana Farber Melanoma Clinic, not only great with people and dares makes jokes in the most difficult day in a persons life, but he's on the leading edge of science at a world renowned medical institution. Creating miracles.
Never able to forget, days before Thanksgiving, my former wife and I went to Dana as the area on my knee after the surgeries was growing by the day. Dr Hodi tells me that its growing fast, and there is no cure for melanoma. Yikes. But, there was a clinical trial of 21-22 people at MSK in NYC, and Dr Hodi had just gotten FDA approval for the drug "ipilimumab" or Yervoy.
I guess I should have asked Dr. Hodi about his medical credentials. Click 2 view. One thing I have in common with others surviving my predicament is the quality of doctors.
I somehow talked my way into the offices of some of the best. Lead surgeon at Tufts, a pioneer in robotic prostate cancer surgery at BMC, head of Melanoma Clinic at Dana Farber, lead surgeon of Clinical Immunotherapy Trial at MSC, my dermatology oncologist At Brigham and Woman's was a professor of Harvard Medical School across the street, and looking at my case and photos of my recovery was Dr Jim Allison, who won the Nobel Prize in Medicine.
Dr. Hodi told us that we should try and talk my way into the MSK NYC trial, and we didn't leave Dana that night until we had a tentative agreement that the lead trial, Dr at MSK (Dr Ariyan), would at least read my scans if I got them there before Monday, I think was Friday. Raining.
So that night, having just been told it was all but over, we spent hours on the phone trying to find the document storage company for Dana Farber, and finally got a gal who listened to my life or death predicament. I remember she stayed late on a Friday wherever she was, found my files, and were sending them off to MSK. That girl doesn't know that she saved my life!
* In 2014 I visit my new dermatologist across from Harvard Medical School, and I gave her documents and photos, and she says "ive seen this leg before, 3 weeks ago cancer symposium in Chicago". Small world, big leg.
It must have been my hero, Dr Charlotte Ariyan, from MSK, who I became close to during my frequent visits, during the period of time doing my Isolated Limb Infusion.
Shutting the cancer leg off from the rest of the body, 2 teams keeping the clock ticking and the other forcing huge amounts of Yervoy and chemo into the large area of my knee effected by the cancer. SO lucky for me it was in a limb.(+lymph nodes). Very.
* A great collection of key moments in the history of cancer is captured in this amazing and touching PBS Documentary - The Emperor of All Maladies - starts off with the miraculous work of Dr Sidney Farber. It speaks of Dr James Alison Nobel prize winner in Medicine. Between the old Boston photos and starting the Dana Farber Hospital, and the videos of the cancer labs at the Memorial Sloan Kettering, it was actually quite an emotional video for me.
* I thought (hoped) I had the prostate cancer removed in 2010, but having spread it led to 35 days of laser radiation on good Old Cape Cod.. But before I could digest the horrible reality of that (never), I had a mole on my knee, 2012/2013. So now I had enough cancer to last a lifetime. At least the melanoma helped me put prostate cancer on the back burner.
*I remember waking up in a blur at Boston Medical Center after robotic surgery, my buddy Mart (Rip), brother in law Dan (Rip) and my former wife, standing over me.. and i'm like - where are we? My nurses included my dear cousin in-law and my former sister in law.
*I remember waking up after the emergency surgery on the mole on my right knee at Tufts Medical Center, by the chief of oncology. He had saved Paul Peirce after a vicious stabbing, they tell me the cancer had spread through prostate the lymph nodes, will see me next week for surgery to remove them. I couldn't taste or smell anything for about 7 months.
* The Canton Hospital School for Children, In Canton Mass is where l resided from ages 6-10+-. It was like Hogans Heroes for handicapped kids. We were allowed to go home on many weekends as long as your bed was made every morning and you didn't get in any trouble.
Every once in awhile we'd help our prison mates plan an escape from the property, usually to the Blue Hills, perhaps 2 miles away (we were all disabled). Canton cops always came and we would all - know nothing, and see nothing. They were always found, simply to be sent back to the Hospital.
Because we were not to put any weight on the impacted him, and my case both hips, they placed full hip to toe casts on our legs (for legg perthes disease). And they placed a wooden bar between the two (as shown below).. but because I was a touch rebellious and kept breaking the wooded bar, so they switched me to metal poles, so they couldn't break. I'll tell you this, it is nearly impossible to sleep any other way then on your back. On your belly the feet dont work, break your toes. And you can't lift the weight to turn on your side. Sucked.
And we apparently ate very well. Of course, not standing for 5 years doesn't bode well for weight loss. I went in a skinny 6+- year old kid, and left the hospital to mid 3rd grade St Pats, Brockton, Ma at well over 200lbs.
I've been making up for lost walking time..
* So Tufts Hospital Medical School told me after the surgery on the melanoma in my knee, that I'd need a second surgery to remove the lymph nodes in the leg/groin as the cancer had spread and they had to bead flue removed. They also said I had a 50% chance of surviving a year, and that was taking interferon, which they said would make me feel like I had a bad flue the entire time - like the rest of my life.
It's like if I had just trusted that opinion, well, i'd not be here. As an aside, several specialists have told me that only about 5% of patients investigate a clinical trial option. And if you think about it, most doctors wouldn't typically keep up with all the clinical trials that are always taking place..
Tufts left it that my only option wasn't an option at all, it was certain death. I can imagine how many desperate people simply listing to the doctor and accept it.
Well, were into September (2025), and I'm glad to be reminiscing about times past, instead of sweating over the cancer stuff as I did in August. That pressure really gets old. So many families have deal with cancer and other diseases, you know what I mean.
Hope you are all well and I look forward to chatting with you next time.
Be Good,
Bob F.
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