I Found A New Starting Place

A couple weeks ago I received news that no one ever wants to hear from their doctor "There's nothing more we can do for you".  Why those may not be the exact spoken words, those are the words that I heard and felt.  It was 

devastating.  Mad as hell, I beat the crap out of a couple trees, broke a few balusters from the new deck railings, wrecked my hand, and screamed at the top of my lungs.  It wasn't fun.  It was allowing my emotions to run out of control.

Fast forward a few weeks and I am good.  I have broken out of the fear I have been locked in for the past year and a half.  I got my head back on straight.  We met with an oncologist at Dana-Farber Cancer Institute (DF) I had seen a while back to review my case ... Dr Nadine McCleary, and I'm so happy to be working with her again, and my entire team of women!  She does NOT believe there is nothing more to do ... in fact, she thinks there are lots of things we can do.  Those changes are underway.

I was glad to be there the moment Dr. McCleary stepped into the room ... nothing but positivity and an action plan already in her head.  I was super excited, so much so, after leaving DF, I called Massachusetts General and cancelled my appointment there for next week.  I don't think there is anything they could have offered at this point I think would be a better plan that what we had at DF.

This is what I sent to my kids following my appointment: "Just leaving DF and very happy with the conversation with Dr McCleary ... she wasn’t happy they told me there was nothing more they can do. She is putting be back on the same chemo but at a much lower dose.  Also getting rid of neulasta and doing something else instead ... saves $22K per infusion, insurance companies will probably like that.  Going to redo the genetic/molecular study to see if there were any changes ... there is probably more, Cooch will update, but, over all, very happy with the appointment and being there.  They also took 2 tubes of blood to doing some kind of tumor marker that is different than CEA I guess .... looking for weird molecules in my blood ... said it was sort of a quick form of the genetic kind of testing, looking for bad cells."

Cooch, my wife Carol, clarified and explained a bit more to the kids for me, saying: "The initial plan is for Dad to do four rounds of chemo. The irinotecan (chemo) will be administered at a much lower dose and another chemo drug, Avastin will be added. As Dad mentioned, no longer getting the shot of  neulasta after chemo (too hard in the body).  

Dad needs to meet with Dr Ferrone again (liver surgeon at MGH) so she’s aware there are more lesions in his liver. Surgery is highly likely down the road.  Depends on how the lesions respond to the newer rounds of chemo. 

Once the blood work results come back (two weeks), Dr McCleaey will also use those results to see if there are clinical trials available for the over 450 markers they are testing.  Dr McCleary will also be requesting the liver biopsies taken on 12/31 and 4/2 undergo additional testing so she has more information about the specific makeup of Dad’s cancer.  That’s all I can remember for now. If you have any questions let me know and I will do my best to answer them. Love you all!!"

Lastly, I have a new supply of RSO and will be restarting the RSO protocol of ingesting 60 grams of high THC concentrate within 90 days.  It is very interesting that I completed this protocol once, reaching my daily target of 1 gram per day.  During the entire first round of RSO, I really don't feel it "hit" me like many said it should.  I've heard that everyone reacts a bit differently.  On Saturday, I started with a 0.28 gram capsule (that we made and used during the first go around).  Two hours later, while sitting in a restaurant, it hit me, like a ton of bricks.  Nothing like I had felt ever during the first round.  It was weird and a bit scary, I was out of control.  Nothing in a bad way, but, as my son might have said, "I was baked".  I didn't like it and I'm going back to start a slow workup again.



OK, so this will be my "lastly" item for this post.  You've probably heard me preach about getting screened - "Colonoscopies Save Lives"!  I already have cancer, do I need a colonoscopy?  You bet.  I had both an endoscopy and colonoscopy a week or so ago.  Two polyps found, taken and biopsied.  I just expected them to be cancerous, but they weren't.  They were precancerous and it circumvented them becoming more cancer within me.  The point - get screened, for all types that there are test for, at least colonoscopy, mammogram and PAP Smears ...  what ever applies, just get with your doctor.



I guess I should make sure my hair looks better so I maintain these good looks everyone keeps telling me about ... until next time ...

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