Not Yet, But I've Been Busy

This isn't the news I'm busting to tell you, but I think it's pretty cool, nonetheless.

I recently was invited to write a guest blog for the National Coalition for Cancer Survivorship. They asked, I was flattered. I wrote. They posted it. Look closely on the home page of their website and you will see my name under the "In The Spotlight" section. Crazy.

I was telling one of my brothers the other day that had you told me, when I was diagnosed, all the cool things that would happen to me and all of the amazing people I would meet, I would have shaken my head at you. The crazy thing is, I think there is more to come.

As long as the guy running the rides lets me stay on the ride, I'll ride until one of us gets sick of it.

Started working tonight on my next literary effort (Those of you who know me really well, know I have a bunch of them that I haven't finished). It's a fictional work. I've been pondering this one and struggling with its construction. However, new ideas and concepts are coming along every day and some of my "concept previewers" like it. I'm even finding myself coming up with some pretty cool literary devices to use in it. Where that's coming from, I have no idea.

I think I do, but I'll finish it first and then see what you think.

"Oh The Things I've Done, In Fact Each And Every One.."

I'm bustin' to tell you some news about the news, but I'll hold off. It's all good stuff and kind of exciting. When it happens, I'll will post it right away.

However, I did hear some news today that is kind of cool. Bo is scheduled to be a big brother somewhere around January 20. How great is that for him and his family?!?!?!

I signed up as a volunteer for the local chapter of the Leukemia and Lymphoma Society. One of the first activities I will do with them is speak as a patient who has benefited from their efforts. The event is a training session for their "Team In Training" activity. After I speak to them, I will join them in a 6 mile training walk. That happens this Saturday (July 3). Last year on July 3, I was going to MCV to receive my first injection to move my stem cells out of my bone marrow.

What a difference a year makes!

Title Credit: "I Am Waitin For The Light To Shine" - Roger Miller

Rest

The statement below is from a Caring Bridge Journal I have been following about an 8 year old girl in Charlotte NC, named Ellie Potvin. The link to the journal can be found by clicking on Ellie's' name in the statement. It is not an easy journal to read in some places, but it is sacred and holy. I admire Ellie's' courage and the courage of her family to allow us into their lives through their journal.

"Ellie gained her angel wings at 11:35am and rest in my arms."

"I will also rejoice in Jerusalem and be glad in My people; And there will no longer be heard in her the voice of weeping and the sound of crying."

Straight From The....

The finalist essays are up on the CURE website. Note: If you want to pass on the essays to others, feel free to do so. However, don't copy and paste them into an e-mail. Rather, pass on the link to the web page. Hopefully by now, you've read the one that Valerie wrote. The one that Catherine wrote is a pretty neat story too.

I speak for myself, but what I think those of us (including all the others that were submitted and those who could have submitted an essay) who wrote the essays want you to know is that the journey through cancer is not one you take alone. You don't have to.

I told one of the other nurses that I encountered in the process, "You know, it (the essay) was written about an individual, but I feel that way about all the nurses I encountered in the process. There is no way any healing could have occured without their involvement. Know that YOU are one of those 'special stories' I tell others."

Her reply was, "Thanks Greg, I can speak only for myself in telling you that I am the one who is so blessed with the people I have the opportunity to work with, and if anything I do makes this process a little easier then I have done my job well and there is deep reward in that."

I told you so.

Hot Off The Wire!

Here is the link to the winning essay from the Extraordinary Healer Event that CURE Magazine sponsored.

I heard it read in person, and it was powerful. Reading it is also powerful. As I read it, I thought to myself, "I got to meet both of these people!" Great ladies.

Valerie, who wrote the essay, reads this blog, so I invite you to post your comments to her on this blog after you read it. This is the link to her blog.

CURE is going to post the other two essays, but they are not up quite yet. As soon as they are, I will let you know.

Here's another note from today. I was having a few minutes of stress earlier today and not long after that, I got the following message from Bo's mother.

"Hey, on Friday morning, as I drove Bo to summer camp, he says, “Mom, do you have Mr. Greg’s phone number?” I said, “Yes, why?”. He said, “I want to call and invite him to come over and play. He’s a lot of fun.” I explained that you lived in Virginia and it was several hours away so you couldn’t just pop over and play anytime you wanted to. He was disappointed but I told him that maybe we could go and visit you some time. He’s a big fan of yours now!"

Needless to say, I'm a big fan of his.

I Love A Parade

Parade Magazine published a feature today on "Cancer In America." I invite you to check out the online content because there are some articles and features that did not appear in the printed version.

I especially appreciated the "Living After Cancer" article. I invite you to check it out also. Some of the things in that article rang true with me and are happening with me right now. Namely, the fatigue and neuropathy related stuff (not severe cramping, but I do get cramping sometimes when I am in bed). When I read that, frankly I was relieved to read that some of that stuff is normal. Whew.

Being a single guy, there are some cryogenic things going on in my freezer. Today, I opened a bowl that I had in there, but had forgotten what it was. It was some pasta that I made before I went into the hospital last summer. It was like stepping into a time machine and whisking back to last summer. I can tell you that all cryogenic things related to that time frame are now out of my house and in the super container (that's what we call the big, city supplied, trash cans in Richmond VA). Yet, another exorcism.

Hang with me the next month or so as I exorcise those demons. The end of July starts the next round of scans, tests, bone marrow biopsy, etc. I meet with my doctor on August 10 for her assessment of the information. In that time frame, there is some potentially cool stuff that could happen and I will fill you in on when/if it does.

"It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal."-Helen Keller

Bo - Part 2

Indulge me. I didn't say enough about what it was like to meet Bo on Sunday. After you finish reading, you'll see why he's one of my role models.

I called his parents as I was on my way to them to let them know what time I would be arriving. His mother replied, "OK, we'll be waiting on the porch for you." I have to admit, I was a bit nervous about meeting Bo, since he was a total stranger, and as kids can be honest, there was no rule about him having to like me.

When I pulled up in front of their house, there he was, sitting on the porch, working in one of his coloring books. His parents asked him why he insisted on sitting on the porch and he replied, "We told him we'd be waiting on the porch when he got here." When I arrived, he waved at me and went inside to tell his parents I was there.

We went inside and started to chat. Bo is a very polite young man. He hung right in there listening to adults talk. At one point, he walked over to his mother and whispered something in her ear. She replied, "Ask him." He came over to me and asked, "Would you like to play Wii with me?" How cool was that!? I already was surrounded by North Carolina hospitality and Bo added another layer. You've seen the Wii picture. I had a big time.

I feel he and I have a bond. I regret the reason we have a bond, but I will never regret the power of that bond.

I remember walking into the chemo room the first day and not wanting to interact with any of the other patients. I had my cancer and they had theirs. There was no reason to share. We all had our own loads to carry and, frankly, I didn't want to carry anyone else's and they didn't need to carry mine. I was wrong.

If you'll be my bodyguard
I can be your long lost pal
I can call you Betty
And Betty when you call me
You can call me Al - Paul Simon

Don't Mind If You Do

A general observation I have of myself and others is that if we are experiencing some discomfort or pain during our medical experiences, we try to "tough it out." We self diagnose and assume that our discomfort is a result of our diagnosis and treatment and "this too, shall pass."

My advice (and it pains me to use the word), is to raise the flag immediately to your caregivers. Do it nicely, but don't be ashamed. They want to know if you are uncomfortable and they are well trained enough to know how to provide relief to you. If they can't they will tell you so. Most of the time, they CAN help you.

As I have said countless times before, my assessment is that people in the medical profession are there because of their compassion towards humanity. They want to help ease pain and discomfort. They want to make their jobs obsolete.

Talking to them helps them live their dream.

Stuff To Think About

What's your take on this?

A related article.

And then this happened one month to the day we were out there. I never even considered the possibility while we were out there.

Some 'Splainin

I was talking to a friend about the next IVIG infusion (scheduled for this Wednesday). He was wondering if the chemo that I had last year was no longer in my body, why is my body still being affected by it.

I explained that it's like being in a boxing match. Even though the match only lasts 15 rounds, the body can still have pain and wounds from the match for some time.

The blood counts are still reacting to last year's chemo. The fight is over, but the side effects are still there to some degree. I'm a lucky guy. I've recovered well, but there are still some things that aren't quite perfect. Some side effects and reactions can take up to two years to completely go away. Some don't go away at all. The neuropathy in my toes is most likely permanent. If that's the worst thing that will be left over, I'm doing OK.

Even more good news about the whole process is that the monitoring of immunoglobulins was not a standard procedure in the past. It is now. That's a good thing and is a result of the continuing momentum of cancer research.

Speaking of left overs, I was sent home from a trip to North Carolina with some barbecue (and I'm not sharing it). I told my friends that if North Carolina ever wanted to secede from the United States, I would oppose it solely to save the barbecue (the good kind - from Eastern North Carolina). I'm looking forward to an omelet of my creation. Fill the center of it with barbecue and cheese. Excellent!

Celebrity Sighting

I was in North Carolina over the weekend and made a visit to Bo and his parents. I've always been his fan, but when he invited me to play Wii with him, I became a solid fan. And yes, he did "educate" me in the skills of playing Wii.

As you can see he looks great and it was an honor to meet him. He inspired (and continues to inspire) me to move ahead and enjoy the current days and the days ahead.

In addition, I walked in the Triangle Susan Komen event in Raleigh on Saturday. Another good friend who helped guide me through my fun is a 5 year survivor of breast cancer. It was great to walk in the event in her honor. They had a 25,000 people walk/run and they raised over $1.2 million

My Ears Perked Up

Heard this on the "Today Show" this morning. Pretty amazing stuff.

Today is National Cancer Survivors Day. I'm going to an event nearby. Wanted to go last year, but couldn't. It will be interesting to mingle with survivors.

Some of last summer's ghosts are coming to visit. It was about this time last year that I was wrapping up treatment with my oncologist and was moving into the MCV phase. We've come a long way baby!

No One Can Love This More Than Me

Got a package in the mail on Thursday. It came from my favorite artist. The picture is of what was in the package. Now, it's my favorite mug made by my favorite artist.

She is a friend of my Nurse Practitioner. She lives in San Jose and flew down to San Diego the other week to hang out with us. The two of them hadn't seen each other in 4 years and they got to spend some time together. How cool was that!

This news cracks me up. I may have posted it before, but I searched my blog and didn't see that I had. If I have, I apologize, but it's great stuff. I do see humor in it, however, it's an amazing example of what is going on in the medical research community. My senses are heightened to this kind of thing and I am amazed and pleased when I hear it. Plus, if this becomes reality, I'M A GOLD MINE!



"Somewhere, something incredible is waiting to be known." Dr. Carl Sagan

My Mistake (And Rant) - Part 2

I realized after my previous post that it could discourage someone from seeking treatment if they are not feeling well. I mean, if there is all this other effort required, other than focusing on getting well, then who wants to deal with it?

You. You have to.

In jest, I've made the comment that I would have been willing to consider a "cash option" instead of treatment. Say, 80% of the dollar value of what has been paid to date to buy some drugs to eliminate the discomfort of the illness and then spend the rest on going out with a bang.

However, I think I may have a little more fun getting under the skin of those who need to get a little education in the process. By doing so, some junk gets cleared out of the way for future patients. Trust me, the letters I sent to the insurance company and the lab contained some spunk and also some frank language. I wrote them yesterday. I reviewed them today. I think they are good stuff.

I found some notes yesterday today that I took during a phone conversation that I had last year with a former stem cell transplant patient. His courage in talking to me about his process gave me the final push I needed to decide to go with the treatment.

I live in a world where I think the whole thing can get easier. I've met people on the treatment administration side of this that say they hope by the time they retire, their jobs won't be necessary. If they had decided on an easier road when they were making career decisions, who knows where cancer research would be right now?

As a patient, we can make the same decision. The effort and work we go through now, during and after our treatments, clears the way for future patients. To those who came before me, I thank you. To those with courage in the future, I thank you.

As a patient, the only thing you have to focus on is getting well. If you encounter others in the process that want to rob you of that focus, call them out.

I don't think we are here to take up space. The whole exist, die, decay and turn into fossil fuels thing doesn't carry much weight with me. Especially not now.

"..There will be no more death or mourning or crying or pain, for the old order of things has passed away..."