On The TV Show...

..."Survivor," (which I don't watch), it's all about making it through challenges, tests, etc. to be the final one standing and to collect money.

Watched it once, I'm over it.

The word "survivor" has a different connotation to me these days. It's used to describe those who have been diagnosed, treated for cancer and are still living. It is often applied to an individual the minute they are diagnosed with cancer.

At Merriam-Webster.com, the word "survive" is defined as, "to continue to function or prosper."

I had a conversation with a breast cancer survivor a few weeks ago and she said, "I've never been real comfortable with the word 'survivor' as it applies to me. I don't think it describes me." I asked her why and she replied (and I paraphrase), "To me it implies that I'm just getting along. Nothing more."

I told her that I agreed. I told her that to me, it means that something has picked on me, was (is) in control of my actions, comings and goings, and I have to alter my life to accommodate that it was (is) in my life. NOTE: I'm putting the word "is" in parentheses because even though there are NO physical symptoms of cancer in my body at this point, I currently have to engage in certain activities (check ups, blood work, scans, etc.) for the next 4 years because there were physical realities of cancer in my body. Those activities define "is."

However, if "is" was how I defined myself, I would be a survivor. I would be "continuing to function" in spite of that what once was.

I am functioning, but there is more. That's why, when I presented at Camp Phoenix the other week, I introduced a supplement to the word survivor. To the other folks there, I suggested we call ourselves "alivers." To me it means that we are in control of that which is not normal that is residing in us. We are the ones making the choices being presented to us. It's empowering us to have the courage to engage in the difficult discussions with caregivers and those we ask to help in our decision process. It says that as a result of being in control, our discussions with our caregivers are open, complete and not over until we have accessed all of the information that is available. By being in control, our discussions with others, who are going through the process with us, are not adversarial, but are informative and productive.

Before I spoke to the two groups the other week, I asked my oncologist for her input on what I should say. She said, "Tell them your story and also tell them that if they aren't comfortable with anyone on their medical team, it's OK to speak up and say so." I respect her for many things and that statement is one of them. She gets it. She not only wants to treat and hopefully cure her patients, she wants them to be alive.

I told the folks at Camp Phoenix several stories about how I "misbehaved" during my treatments and other interactions with caregivers. I didn't consciously decide to do all of those things, they happened. The survival instinct in us says, "Show up." The "aliver" instinct says, "Show up to the party."

With that, I'll leave you with this. I saw it performed as part of a production entitled, "Blast," at The Kennedy Center several years ago. It makes me feel alive to watch it. Watch it. Be alive.

Looking Back

The reason I am posting this picture is that I am connected to this structure. It is the house (we refer to it as "the shanty") my family was living in when I was born. I took this picture about 15 years ago. I did not recall it as we moved into another house when I was pretty young sometime in the early 1960's.

When I took this picture, it was the first time I ever really "saw" this house. You can not see it from the road as it sits back in the woods about a quarter mile or so off of the road.

Thought you may find it interesting. Looks like it has had some additions built onto it during its life, so I don't really know how much of it was there when we lived there.

All That Coolness In One Place

Photo credit: http://www.floridabugs.com/images/spiders/daddy_long_legs_lrg.jpg

I saw one of these in my car today and was reminded of a game we used to play as kids when we would encounter one of these. Because I grew up on a farm, we would pick them up, hold them by one of their legs and ask them, "Which way are the cows?"  Miraculously, they would point to the exact location of the cows and then we would let it go. OK, sometimes, we would remove their legs - but we were kids - we were goofy that way.

Had I asked the one I saw today, "Which way is something cool going to happen?", it may have pointed in the direction of Mechanicsville VA. Saturday, is the Camp Phoenix event that I will be attending.

Here is the official press release of the event:

September 1, 2010
Hanover County, VA

Camp Phoenix is a yearly weekend retreat for adult cancer patients and their caregivers that was envisioned, developed, and organized by the members of the Richmond Chapter of the Oncology Nursing Society in 1996.  The retreat is a grassroots effort by the nurses of the ONS chapter, and was founded by Kathy Barksdale, NP, OCN, and Pam Miller, NP, AOCNP who recognized the need for respite in their patients.

Camp Phoenix is designed to be a relaxing, rejuvenating, and fun retreat that cancer patients can share together along with the ONS nurses who volunteer their time and money to keep the retreat going at minimal cost to the cancer survivors.  The camp is organized and staffed by oncology nurses.

This year, Camp Phoenix has lost much of its outside financial support due to the economic recession.  As a result, it will be a one-day event, despite efforts by the Richmond ONS nurses to raise adequate funds for a full weekend. “It really hurts the full benefit of Camp Phoenix to have only one day for the survivors to participate”, says Derryel. Johnson, RN, OCN, an oncology nurse for 24 years, and the retreat’s co-chairperson. At Camp Phoenix, cancer survivors can share their triumphs and challenges, have fun, and just relax together in a supportive environment. This is the second year that it will only be a one-day event. The date of the camp will be Saturday, September 18, from 9 AM to 6:30 PM.

The keynote speaker for this year is Mr. Greg Frazee, of Richmond, a cancer “aliver”, as he would like to be known. Tricia Cox, NP, AOCNP, will also present on the topic of survivorship. The day will be full of activities and educational presentations at its usual venue “Camp Hanover”.

Camp Phoenix has been pivotal in providing an outlet for stress and uncertainty in the lives of cancer survivors. Please help the Richmond ONS oncology nurses keep this wonderful event going!

Camp Phoenix is a 501©6 non-profit organization.
For donations and further information regarding Camp Phoenix contact Derryel Johnson at lyvonnern@aol.com or Betty McGarry RN, MSN, at bcm2b@earthlink.net, or Annette Graham at agraham@vacancer.com.

Here's something I'm also excited about in connection with Camp Phoenix. Two people, who were very instrumental in keeping my head on straight throughout the entire process, will meet for the very first time on Saturday. I'm speaking of Annette Graham and Judy Davis (who was my pre-transplant coordinator at MCV). I can't wait for them to meet. I may spend the entire day watching them interact.

I sense it is going to be a great day for everyone. 


"Had I known......"

An Offering

I offered this excerpt, (with my "spin" put on it) from the New Testament book of Revelation 21:1-4, to the folks I talked to on Sunday.

Then I saw a new heaven and a new earth. The former heaven and the former earth had passed away, and the sea (C - as in "cancer") was no more. I also saw the holy city (an oncologist, an oncology nurse, and a medical assistant), a new Jerusalem, coming down out of heaven from God (coming into the exam room), prepared as a bride adorned for her husband (prepared with treatment medications and recommendations for healing). I heard a loud voice (voice of assurance) from the throne saying, "Behold, God's dwelling is with the human race (in the form of research, cures, scientists, medical professionals and caregivers). He will dwell with them and they will be his people and God himself will always be with them (as their God).He will wipe every tear from their eyes, and there shall be no more death or mourning, wailing or pain, (for) the old order has passed away."

That's what I've seen.....and continue to see.....

"Alright somethin's happening
Hold tight it might be lightning
Turn up the lights I feel like dancing
Can't sleep at night my heart keeps missing a beat" - Peter Frampton
 

Alternatives

I was at the University of Maryland Home and Garden Information Center on Wednesday and was "introduced" to the bug in the picture by Jon Traunfeld. The bug is a "Wheel Bug." I learned that in spite of their appearance, they are beneficial as they like to feast on agricultural pests such as Japanese Beetles. Jon told me "If you had a garden full of these, you wouldn't need to use any pesticides."

Which naturally leads me to last nights' presentation of "Stand Up To Cancer." Good concept. Great stuff. I like that they are supporting an initiative to gather together leading researchers to pool their resources and collectively find solutions to halt cancer in its' tracks. I hope it works.

However, I could have done without the drama. I wasn't crazy about the opening sequence. If you didn't see it, the opening sequence was an assortment of celebrities reciting the line, "Cancer doesn't care....." I agree. However, it was a bit dramatic for my taste. Just my opinion.

Later on, Brian Williams made the comment, "Someone once said, chemotherapy is like using a nuclear bomb on a house when you want to turn the lights off in the kitchen." I cringed when I heard that.

I agree that chemotherapy is somewhat of a "nuclear option." But at least it is an option. My perception of chemotherapy now, vs. before I received it as treatment, is different. You must know that before chemotherapy is administered as an option for treatment, the patient is tested to determine their physical ability to receive and bounce back from any form of chemotherapy treatment. It is not administered indiscriminately or randomly. As I have said before on this blog and in person, I am curious to know whether the volume of chemotherapy drugs was equal to the volume of drugs that were given to me to counteract my bodys' reaction to the chemotherapy drugs. That's how far the research has come since the first days of chemotherapy treatment. There are people alive now because of receiving chemotherapy treatments.

I asked my doctor for her insight and wisdom about what to say when I speak at the upcoming events. She replied, "Tell them they need to be comfortable with their doctors and nurses. If they aren't. then it's OK to speak up and say so." I thought those were good words from her. It points out that from day one, the individual who has been diagnosed may feel attacked and vulnerable, but ultimately, the patient is in control of the situation. The cancer doesn't own you. It may change you. But....you own it. It's in your body. It is not natural for it to be there.

Not to say there aren't better treatment options out there; such as using the bodys' natural defense system to fight cancer. I'm excited about that option and I believe it will be standard treatment someday. That is the importance of funding continuing research and that is what "Stand Up To Cancer" is about. However, there is no point in scaring people away from the current treatment methods if those methods are their best option.

Frankly, when I first saw the wheel bug the other day, I wanted to stomp on it because, based on its' appearance, I assumed it was just another worthless critter.

Benediction To Yesterday

This morning while walking, I looked at the stars through a sky that was unfiltered by humidity.

Saturday, I glimpsed at one of my favorite views of Washington DC. It is the view of the city from the crest on I-395 above the Pentagon. From that vantage, when the air is clear, you can see the entire city from well north of the National Cathedral, to beyond Fed Ex Field in the east, and "far beyond where the horizon lies" in any direction.

I recall the faces of the doctors, nurses and caregivers that I experienced over the last two years.

That is the song I sing.

Where I Am And Where I Am Going

I was talking to the pastor of my church yesterday after the service (after I walked out during the sermon.....I am dealing with some allergies and felt a coughing fit coming on that could be a bit disruptive.....so I excused myself, mid-sermon, and went outside to cough it out, get some cough drops, etc.) and was picking his brain on my upcoming talks. I asked him for some theological guidance and clarification on what I was going to talk about next Sunday. I told him I think there are things in front of us that we can see but can not see.

This is a link to what I am talking about. I am grateful that I have been led to a church that is a significant part of this.

This, however, is not what I see. I pray it is one of those things that the design of the universe will overcome. A friend of mine uses the term "religious bigotry" to describe these type of organizations.

The Translation Is This...

Several readers contacted me about the anxiety mentioned the other day. The source of that anxiety is gone. I brought the source into my life and I dealt with it. When I brought the source of anxiety into my life, I knew then I was taking a risk, but I put protections in place to allow myself to push it away and remove it from my life if needed. Even though it was overwhelming at times, I was in control of it. I knew that it was an unnatural event in my life and I knew that by the design of nature, it would be gone eventually. I was right.

That's what I learned from the cancer experience. You are in control at all times. That capacity exists within the human form. I once heard a pastor say, " God will complete his work through us and in spite of us." I have been critiqued for not being more out there about my spiritual beliefs and how they served me while going through the cancer experience. The source of my anxiety, mentioned in the previous paragraph, was very vocal and demonstrative in the practice of his spirituality. He is permitted to be. However, he did it in a way that turned people away. I once told him, "Sometimes, the demonstration of your faith needs to be experienced by others, rather than shouting it at them." In the end, I knew from experience that all would be well. I am at peace with my understanding of the order of the universe. I'm not saying that all things will turn out how you want them because you have a strong belief system. I'm saying that something ain't right, it won't continue to exist. That's my belief. Cancer ain't right. It still exists.  Because others in the past believed cancer was not natural, they chose treatment, they chose to administer treatment, they chose to research treatment and we benefit from their decisions. I like to think that because of my decisions regarding treatment, others in the future will benefit from even more advanced treatment options.

In relation to yesterdays excerpt from "Peace Like A River," by Leif Enger, what I will be going back to is my cancer experience. I have been invited by a church in Harrisonburg VA, of which I was a former member, to speak to their combined Sunday School Class next week on September 12. They have asked me to share my experience and I will also tell them specifically how my faith background played a part in my reaction and actions. Some of them may not agree with some things I share. That's OK. That's the point of community gatherings; to exchange and share ideas.

In addition, I will be speaking at an event sponsored by the Richmond VA Oncology Nursing Society on September 18. The group will be made up of cancer patients, survivors (stay tuned for my take on the use of that word) and their caregivers. It will be a lighthearted romp through my cancer experience and what conclusions I have arrived at as a result of my approach to my diagnosis and course of treatment.

I will continually go back to my cancer experience (and other life experiences) as I sculpt my responses to future life experiences. I won't need to apologize to anyone if I make an incorrect decision that doesn't harm anyone but myself. I won't listen to unsolicited advice, but I will welcome your input if I engage you in a conversation. 

I will continually give thanks for you because you read the blog and because you are most sincere in your demonstration of care for and about me. Because you are reading this, you are part of the group whose care I experienced.

To reconstruct a phrase often recited by Daniel Lawrence Whitney , "I don't care who you are, that's good stuff right there."

Second Act

“I breathe deeply, and certainty enters into me like light, like a piece of science, and curious music seems to hum inside my fingers.


Is there a single person on whom I can press belief?


No sir.


All I can do is say, Here’s how it went. Here’s what I saw.


I’ve been there and am going back.


Make of it what you will.” - Leif Enger, "Peace Like A River"
 
Stay Tuned.............(but don't fret)

Now That's Odd

 Photo: http://www.sitcomsonline.com/photopost/showphoto.php/photo/134011/cat/779

I was reading a friend's blog just now and for no apparent reason while I was reading their blog, I recalled the smell of horse breath. It's not a smell that puts me off, rather, it's a smell that has excitement associated with it. When I've smelled it in the past, it meant that I was about to get on a horse and ride. The last horse I rode was in a snow covered woods in the Poconos sometime in the late 80's. The last time I was around a horse and actually touched it was a few years ago in North Carolina.

How to connect that recollection with my experiences shared in this blog, may seem to be a bit of a stretch. Not really. It's not as obvious as "You need to get back on the horse again, Greg," or anything like that. I think it's about knowing there is excitement ahead. What that excitement is, I have no clue.

It hasn't been all  blissful days since the diagnosis, treatment and receiving the "all clear." It wouldn't be even if there hadn't been a life changing event in my recent history. However, I think that once you get the all clear, there can be an assumption that all is well and will be well after you come out the other side. Not true.

I've shared some of my challenges with folks in person and I don't feel like posting them here. I will tell you, the challenges have been unique, sometimes frightening, but never, I say never, have I felt like they can't be overcome. Once you've been through the biggest challenge you will ever have to face, your perspective on lesser challenges changes.

What if I have to face an even larger challenge later on? I have no clue how I'll react. That includes the decision I would have to make if there was a relapse, or another form of cancer that develops from the result of having the treatments I had.

That will be my decision to make. I may approach others for their input, but I will have the final say on the matter. I may make a mistake in doing so.

None of what I share with you is with the intent of bracing you for some pending medical news. I have been open with my diagnosis, treatments, etc. to now and will remain so. There are people in this world with whom I will not share details if they are not smart enough to find or haven't been directed to this blog.

Nope, what this post about is purging some anxiety that has been building. I will tell you that a huge part of that anxiety will be gone today. Those who have spoken directly to me know of what I speak. If you don't know me personally, trust me, it's not that important and it's not cancer related, even though it is a cancer of sorts.

Giddyup