DrGreeley's (known better as Dan Greeley) collection of my thoughts on almost anything... a place to vent... a place to offer my perspective... and hopefully, a place to provoke thought and encourage changes for the the betterment of "whatever".
As good of a day as I had last Monday (when I connected with Dana-Farber), the last 3 days have been pretty tired and wiped out days. It's the way it goes when you are sick I guess. I'm so frustrated about the lack of energy. It seems like I sleep all the time. I even slept through game 7 of the Stanley Cup Finals ... my Bruins fell a bit short, but they had a great season. Congrats to the St. Louis Blues on their first Stanley Cup Championship ... you earned it (dang it).
Wendi after doing her cartwheel 2019
Although I feel exhausted, there are still many good things in my life, the golden moments. I wish I could share with you a video my friend, and Director of the U.S. Fish & Wildlife Service Northeast Region, Wendi Weber made for her birthday. She says "My goal is to do a cartwheel every birthday until the end. So grateful to celebrate another year". As cancer survivors, it is all about celebrating more birthdays. I guess I've got until December to figure out what fun thing I can do to celebrate my next one too. Her words to me mean so much during this time that it is so easy to slip into that dreaded "fear factor" that comes with the territory. Her words echo what I have tried to do with this story and blog, to provide courage and inspiration to other on the journey. She said "We are in this together. I am here to provide any support and encouragement I can. Staying in the space of gratitude and having goals are so helpful for me. Whether the goals are by the minute, day or month it helps to move forward. Stay strong and positive and know you are loved and supported. Thanks Wendi for the inspiration, friendship, care, and compassion. My second good thing this week was an email from my sister Karen. She forwarded me a blog post from Pastor Rick's current teaching series titled "How God Turns Setbacks Into Comebacks". Pastor Rick says "When Elijah faced that experience, God led him to do three things that helped him recover—and they’re things that can help you recover, too, when you’re at the end of your rope". He goes on to give me a reason why I am so tired all the time when he says "In the world’s most famous psalm, the Bible says of God, “He makes me lie down in green pastures” (Psalm 23:2 NIV). Sometimes God must make you lie down because you’re unwilling to do it on your own. You can’t be spiritually and emotionally strong while you’re physically depleted". Check it out, it's worth the read. Lastly, a video message I recorded yesterday, when I was on day 2 of being really tired as I am again today. I did get a few things done, but, not feeling like I use to yet. Come on energy!
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 ...
Short and sweet tonight, I promise. #LetTheFightBegin. Best day in a long time. Still short on energy and endurance, but, that;s coming back slowly as your well wishes, prayers, and divine intervention is doing it's job.
The plan is coming together:
An appointment with my Boston area oncologist at Massachusetts General Hospital (MGH) - Dr. Jill Allen is set for June 17th
An appointment with my oncologist at Dana-Farber/Brigham and Women's Colon and Rectal Cancer Center - Dr. Nadine McCleary is set for June 10th
A redoing the RSO protocol (60g of high THC, greater than 70% within a 90 day window)
Just a bit of rambling today, not a lot of substance, it's just how the day went. Spoke with my local oncologist and met with my local oncology Physicians Assistant today, along with speaking with my built in second opinion, the amazing Dr. Steve Paul (one of my awesome brother-in-laws). With the best caregiver I could have hoped for, we have come up with a plan of attack. #LetTheFightBegin.
The rough plan includes:
Reconnecting with my Boston area oncologist at Massachusetts General Hospital (MGH) - Dr. Jill Allen with hopes for a clinical trial or other approach she might suggest.
Reconnecting with an oncologist I asked to review my diagnosis and treatment plan several months ago - Dr. Nadine McCleary at Dana-Farber/Brigham and Women's Colon and Rectal Cancer Center.
Connecting with MD Anderson Hospital in Houston in search of clinical trails I may be eligible for.
A redo of the RSO protocol (60g of high THC, greater than 70% within a 90 day window) ... this is subject of a whole other post over in my CanCannaCure.com blog. More to come.
I learned tonight that the medical community is about to tell me there are no more options to treat my cancer. I reject that notion. #LetTheFightBegin. I'll apologize in advance for some of my language in the video ...
How can you help?
Prayers to start with, divine intervention may be the only way for me to extend my life.
Follow and share these post ... it's all about education and early screening.
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