Life with Cancer

Going to hopefully start hospice tomorrow, maybe that will give me some clarity. I’m drifting in and out of the spirit world, sometimes I wake up and don’t know where I am. I will try to document the journey as I cross over. I am trying to be brave in these final days. Cancer has not won, Cancer will never best me. Nate, Rick, and Jackie, we will see each other soon. 

Mitakuye Oyasin (Mitakyasi)

Pronunciation: Mee-tah-koo-yay Oy-yah-seen

Meaning: Mitakuye Oyasin is a Lakota Sioux term literally translated as: “All My Relations.” The meaning, however, extends beyond that of the English translation to include not only human family, but all of the animal, plant and mineral kingdoms as well as the forces of nature (wind, thunder, lightening, etc.) plus the elements, in that we are all connected in the intricate web of existence, and that each is affected by actions of any other. Everything is interrelated —nothing exists in isolation.

Change comes from within —we find a better way as we learn to live wisely.

These things will keep trickling out as I better organize my thoughts. 

I have lived an incredible life filled with wonderful and loving family and friends. I have lived many of my dreams and done and seen things that filled me with awe and wonder. I spent much of my time immersed in the natural world that I love so dearly. Despite all the ills of our society and world, there is much more good than bad. Go out and live, don’t be afraid. Try things you never thought you could ever do and put failure out of your mind. Embrace the true miracle that is everyday life. Always follow your heart and passion. We only have a short time on this earth. And never let anyone convince you that you can’t live your dreams, that is why we are here. Life is not always easy but every moment is precious, the good and the bad. And above all things, never stop loving yourself.  

Please don’t be sad for me, I am at peace and have no regrets. 

Greg-

When you realize the fact that everything changes and find your composure in it, there you find yourself in nirvana.

It was the worst possible news today and my entire team was in tears.

I will know more early next week, but we’re talking weeks to maybe a few short months. 

My advanced directives, will, and power of attorney are all in place. No historic measures allowed, no hospital stay at the end. I will die as I lived, free and hopefully under the open sky. 

I can not express how deeply the friendships I have made through this place called Tumblr have come to mean to me. Many of you have become like family.

I will add more details as they present themselves. Monday is a procedure to confirm the small cell diagnosis. I have refused palliative chemo. But not palliative care in general... 

Patti and I are working on plans for the short-term. I may undergo a short radiation session to help control pain and get better mobility. Beyond that, just going to keep living and soaking up this beautiful place I live in. 

Thank you for all of the love and support my friends, it has meant so much to me.

Tomorrow I have a full morning of “rule out” imaging... As in rule out some nasty small cell (scare the fuck out of me!) mutation that would be a death sentence...

First up, Nuclear bone scan radiopharmaceutical shit injected into my veins. Yum. This requires a 3 hour wait after the injection before the scan. So in between, I’ll get a chest X-Ray, followed by a CT with contrast. In order to do the CT, I have to pre-medicate with 150mg of Prednisone to ensure that I don’t stop breathing from Anaphylaxis... Then 30-40 minutes in the bone scanner trying to lay perfectly still and not have a claustrophobic reaction to the tight confines. Or squirm from my lower back pain that has been a full-on bitch lately. 

So, your intrepid guide to all this fun is going to be doped to the max on Ativan. And I thought today would be a perfect trial run... I’m not too big on the hard stuff, I really don’t like giving up control. But since this is damn close to my 5 year diagnosis anniversary, I need all the help I can get. Freaking out barely scratches the surface of how I feel today.

Please burn some sage or whatever you do to invoke the higher powers, I need all the good vibes I can get. Either this will be nothing or something too horrible to contemplate.

Update when I get it-

But in the meantime, from nearly a week long crisis intervention at the cancer center...

Obviously, it’s something everyone experiences, the body’s response to injuries, illness, and inflammation. I’d had my fair share of it before getting diagnosed but cancer has redefined it. You could say I’ve become something of a connoisseur of pain and all its flavors and variations…

The thing about many types of cancer (including mine) is that it can be growing, spreading, and doing damage long before the pain sets in. It’s like the malignant cells can somehow work around the nerves and do their work silently. And then there is a day where you wake up and realize something is very wrong… For me, it was a stage 4 diagnosis that was the beginning of a journey into experiencing pain that I could never have imagined.

The latest version has been a reaction to my recent Lupron injection. The infusion nurse either grazed or scored a hit on the sciatic nerve which set off a round of the most excruciating nerve inflammation I’ve ever experienced. It takes a couple hours of loosening it up each morning to be able to stay on my feet for more than a few at a time. It’s like having a live wire coming out the base of my spine that wraps around my butt cheek, into my crotch, and down the leg… Both my Chiropractor and Oncology NP just keep saying it will take "tincture of time” to dissipate. But in the mean time, I've spent most of the last few days laying on my side (because I can’t sit) or stretching, trying not to make it worse.

This is pain that comes not from the disease itself but circumstances created by a combination of treatments. Lupron injections have always resulted in three or four days of localized soreness but occasionally they hit a nerve. The problem is, that whole area was in the path of IMRT radiation beam making it predisposed to inflammation. Add to that an irritated lower back from weeks of coughing due to illness from a compromised immune system, another gift from radiation. Net result? Burning, searing, pain that has just about pushed me over the edge.

Early on, I experienced bone pain from the mets (metastasis) that set a new bar for worst ever. When they asked me to rate it on the 1-10 scale, I said 11… It was so relentless that I ended up having to use Oxy every 3-4 hours around the clock. That pain broke me down, I just wanted to give up and die. For the record, I hate narcotics and resisted their use until there was no other option. I was buzzed into a foggy state for days at a time and barely remember it all. I also swore I’d never use it like that again… Tip for the newly diagnosed—don’t draw lines in the sand… I have many examples of things (treatments) I said I’d never do and in the end, when the shit inevitably hits the stage 4 fan, did them to survive.

But so far, I haven’t pulled that bottle of pills out of the drawer that looks like a mini pharmacy… Why would I do that to myself? Relief is just one small white pill away. I am taking anti-inflammatories but they have their limits. I can only use a low dose since my liver and kidneys are being pushed hard by Zytiga and the long list of other daily meds.

Guess it’s that streak of stubbornness I’ve always had. Cancer seems to have taken it to a whole new level… And maybe a deeper understanding of what pain is and how to live with it. No matter how bad it gets right now, I know it will eventually resolve. Of course in the last few days, I’ve had to keep repeating that to myself over and over. And when I’ve hit the wall and started losing it, Patti pulls me back from the edge. She gently reminds me of all the other times when I said "I can’t do this anymore" and then pushed on through it.

Well... the Cape was pretty much a bust this year. After delaying our departure by several days, I thought I had recovered enough from the last respiratory thing. But as soon as we got out there, I got worse... Being sick away from home, even in a place as beautiful as the Cape sucks. I managed one walk on the beach and that was it. As soon as Patti was done with her presentation at the encaustic conference in P-Town, we headed for home. We were there for all of three days... 

A bee update from Meredith-

Not again...

This is getting old. Friday, we were supposed to leave for our annual trip to Cape Cod. Thursday I was feeling a bit off but hoped it was just allergies and or the usual lethargy at the end of a Lupron cycle. We decided to wait a day and hope for the best. But yesterday I started feeling worse and by last night it was another full-blown respiratory infection…

This is the third trip in a row (in as many months) I’ve had to bag because of illness. In the three years leading up to radiation (which included chemo, immune therapy, and multiple drugs) I wasn’t sick this many times!

Apparently, the hit I took from high dose IMRT did more damage to my immune system than all the other treatments combined. Some of the numbers in my various labs have been kind of scary but they (my team) keeps trying to reassure me that it’s “normal” to see that after treatment. Of course I have done way too much “research” on what those numbers could mean have freaked myself worrying about chemo/radiation induced MDS and Leukemia… Sigh…

Regardless of my situation, Patti has to be in Provincetown later next week for a conference. If by some miracle I feel better by then, maybe it won’t be a total wash. And what really sucks is that my dear friends Melissa and Jenn will be in P-Town that weekend and we were going to hang out.