Tuesday, August 27, 2013

I Got No Scans In The Morning....

Was trying to figure out a witty way to complete the phrase using the word "moon," in association with a bone marrow biopsy (and paraphrasing, "I Got the Sun in the Morning" from "Annie Get Your Gun") but everything that came into my mind was slightly inappropriate, so I went with only the first part of the phrase.

Yesterday, I met with the folks at MCV for my routine annual exam with them. I also received my final immunizations and there is no more of that silliness left for me to do. Six separate shots. Not painful at all, but today, both of my arms feel like they have been punched pretty forcefully. That I can deal with.

Yesterday was the culmination of a devious plot I unhatched while standing at my kitchen counter early one Sunday morning a few weeks ago. At the time I thought to myself, "You know Greg, you are four years out. You are doing pretty well. If you had never been diagnosed with cancer, what would the protocol be for making that diagnosis if you were going to the doctor for the first time complaining of odd pains, discomfort, etc.?"

With my "extensive" knowledge of oncology, I deducted that I would be put through a battery of tests, including a few rounds of blood testing and only if there were anomalies present, I would have to have a CT scan, bone marrow biopsy and pulmonary function test. Since my health is reasonably good and I am not experiencing any of the symptoms that I remember all too well from 5 years ago, I questioned why I need to undergo the heavy duty testing for the remaining time left until I am considered "cured."

I thought ,"What the heck? I am going to present it to the doctor when I meet with him at MCV and see what he says."

When he got to the point of the examination where he asked, "Do you have any questions for me?", I proceeded to present my "theory."

I didn't even have to make the full presentation I had rehearsed oh so well. He asked me if I had any difficulty breathing during exercise or if during exercise I was unable to catch my breath. I explained that I did not have any of those difficulties. He then explained that for the type of cancer I had, the testing would not show anything until I was at an advanced stage and by then, the other symptoms of lower back pain and bloating would be present. He agreed that we would waive all of the remaining testing, but did recommend that we do a final CT scan next year. Year 5. "Cured" year.

I was pretty happy with myself for being the educated patient, but also happy that the big testing is done. I met lots of great people during those tests, but I am mentally over the testing.

Figuratively and literally, they are a pain in the......

Oh what the heck, " I got no scans in the morning and no more moons to drill."

Thursday, July 25, 2013

3 Days In July

I didn't want the most recent "newsworthy" British kid to be born on July 23. I didn't want to share that day with him. By reviewing my blog posts of 2009, I was reminded July 23 was the day my stem cells "came home." The good folks in the Bone Marrow Transplant Unit consider it "your second birthday." 

On July 24, I was looking for something in my armoire and I came across a bag with a couple of the masks pictured above. I used them when I stepped outside to travel back and forth to post transplant follow up appointments.

I saw on Facebook today that it was the birthday of the nurse who assisted during my transplant. The folks I know who met her knew she was one of those nurses who were a perfect match to my "cleverness" and wit.
She's a great soul, who is still doing what she does and when I see her, she is the same fun and intelligent soul I got to meet and know.

I am beyond the drama and trauma of 4 years ago, but every now and then, when the wind is right, I can resurrect some of what it felt like. Not in an excessive way, but more in a, "Ah yes, I remember that" kind of way. Then, I move on.

Someone I know recently said, "I think Greg has moved on beyond his experience." In some ways, yes I have. In others, I haven't. I am comfortable with the balance of the two. The things I haven't moved beyond are the things that I recall when someone needs my help working through their cancer experience. 

The things I haven't let go of cause me to use the following opening when asked to share my experience with "the alien." 

I say, "Had you told me 5 years ago that in the span of less than two years that I would be hugged incessantly, have meals made for me and delivered to me, have my laundry done for me, have my house cleaned top to bottom, would have been kissed on the cheek by a Hollywood actress (yes, there were witnesses) and get to spend a weekend in the woods with nurses, I would have said, "Sign me up. Just tell me what I need to do!"

What I like most about the experience is that once the physical stuff was over, there was, and still is, time to process what happened emotionally and mentally. I did not suddenly become mentally and emotionally stable, nor am I anywhere near it. However, I think I have made peace with some of the "big puzzlements."

If I've said it before, forgive me, but I expected to step into Hell when, by myself, I wheeled my luggage down the corridor from the admitting area to the Bone Marrow Unit. I know that from my time spent there, I received a glimpse into Heaven. Into God's Kingdom on this earth. The earth that was created, and when it was created, "it was good." 

The good is still there and I don't believe we have to get all mystical to see it. I now raise my eyebrows to anyone who thinks that all of this was created to, like a child bored with the structure they have built with building blocks, be destroyed one day. 

Instead, I think this place is like a compromised immune system, that is given building blocks in order to restore it back to what it was intended to be.

I know that my view of heaven may not be as fantastic as that of Eben Alexander or Colton Burpo, but to me it is more real and calls us to help build it rather than win it as a prize.

“We see a newborn moth unwrapping itself and announce, Look, children, a miracle! But let an irreversible wound be knit back to seamlessness? We won't even see it, though we look at it every day.” 
Leif Enger - "Peace Like A River"

Saturday, June 22, 2013

"I'm Just A Soul Whose Intentions Are Good"*

On the day that the top news story on The Today Show was the death of James Gandolfini, I saw these two items on various news feeds:

Grayson Clamp, a three year old boy who was able to hear for the first time.

A new drug for the treatment of leukemia.

That evening, I watched and participated with a group of people as we assembled 12,000 meals for Stop Hunger Now.

That morning, while on the way to work, I watched a person in a pickup with a trailer attached to the back, maneuver the trailer into a parking spot by expertly turning the steering wheel of his pickup in the right direction while traveling in a reverse direction.

Growing up on a farm, I did the same with farm machinery attached to the tractor I was driving. I often wondered then (and even the other day), if I had everything in perfect alignment, why would I need to turn the steering wheel at all?

Finally, I realized that all things are affected by even the most minute variance.As shown in slide 5 of this link (a great illustration how cancer starts and "works'), one million cancer cells are the size of a pinhead and are undetectable. It is not until the the cancer contains one billion cells that it becomes detectable as a lump about the size of a grape. However, it all begins with one small variance. In the example of cancer, one small variance creates a negative situation.

But all small variances don't have to be that way.

With that said, I wonder what today would have been like if the lead story on The Today Show on Thursday would have been the story about Grayson Clamp?

I wonder what tomorrows would have been like for people who are hungry and need food?

"Oh Lord, please don't let me be misunderstood."*

* Lyrics from, "Don't Let Me Be Misunderstood," by The Animals

Saturday, May 4, 2013

God, That's Good*

I attended this event Thursday night.As the article states, the evening was a presentation and discussion on “Good and Evil in Human Nature.” In my mind, my favorite part of the evening was the discussion that followed the short presentations by the clergy present. In the group of which I was a part, there was a representative cross section of the various faith groups present. During the discussion, we learned of each other's understanding of the creation of man. Although they were similar, there were differences in the story. As I listened, I realized that we as humans try to understand the origins of evil and yet, are unable to come to a conclusion to which we can commit ourselves.

During our group discussion, I spoke up and suggested that for myself, I'm through with trying to make the discernment of how evil originated and how it sustains itself. I do believe that it exists. However, if my focus is entirely on evil, then I'm left on the dock watching the ship sail. The "ship" is what I suggest is the common thread shared by all of the faith groups that were present. The "ship" is the recognition that good is also present in the world. We are created with that knowledge and we are responsible for delivering good to the world. I believe by spending futile efforts trying unsuccessfully to find the root of evil and then killing it, we miss the opportunity to do what we are here to do. 

During the discussion, I made a football game analogy with the point of the analogy being that even though countering evil may seem overwhelming, it is possible. The analogy was OK, but afterwards, I thought of another one that resonated with me.

I thought of my oncologist and the nurse practitioner that works with her. I know that they can see 30-40 patients in a single day. All of those patients come into the exam room carrying the evil that is cancer. The doctor and the nurse practitioner, by themselves, face that challenge, individual by individual, day by day, year by year. The evil of cancer in a portion of those patients does overwhelm and kill the patient, but in others, the "evil" is put in check and, in others, totally eliminated. 

I recognize that in some instances, the origin of the cancer evil is known, but in many other instances (such as the one with which I am most familiar) the origin is not known. However, it is the task of the doctor, nurses and patient to move beyond the "how did this happen" phase and work toward the healing that is ahead.

"Because in all of the whole human race, Mrs. Lovett, there are two kinds of men, and only two. There's the one staying out in his proper place and the one with his foot in the other one's face." *

* Lyric from "Sweeney Todd" by Stephen Sondheim

Monday, April 29, 2013

"Two Roads Diverged.."*

The picture of the dog above comes with a story. Early one evening during the spring of 1977, at the age of about six weeks, this dog found himself walking along a ditch between two fields that had been recently planted with corn. How he arrived there, no one really knows. As he walked along the ditch and came to the end of the fields where they met a gravel road, he had a choice to turn left or right. Or he had another option in which after veering to the right, he would then veer to the left, following a gravel ramp, and continue in his original direction towards the setting sun. The third option was the most difficult as it involved ascending a short, steep incline that ultimately led to an open door leading into a large barn. Normally, at that point in the evening, the barn door was rarely open. This particular evening however, there was a teen and an adult male working in the barn. Who saw who first also remains open for discussion, but when the eyes of all 3 characters met, their eyes met with curiosity and not fear. So curious was the dog, that he continued toward the two males and as he reached where they were sitting, he laid down to rest next to the younger of the two males. I'll never forget that moment.

Late in the spring of 2012, I was made aware of an individual who was preparing to undergo a stem cell transplant procedure for his cancer diagnosis. His family, being made aware that I had undergone a similar process, asked that I reach out to him. I did. When I met him and learned his diagnosis history and treatment, I learned that he was diagnosed 10 years earlier and had been dealing with recurrences and new treatments for those 10 years. He was tired and frustrated. After his stem cell procedure, he had to make another decision to undergo a dramatic surgical procedure that would involve a 50% possibility that he would not make it through the surgery with his life. He chose the surgery because, in spite of all he had been through, he still wanted to have the opportunity to live. 

He survived the surgery, but within a few months after his surgery, a tree limb fell on his car, totalling the car. Even though that was insult to injury, at this very minute, he is alive and well and enjoying his life with his family. To be candid, I don't know how he was able to tolerate what he did for as long as he did, or make the tough decision that he did. I can't say I know how I would decide in that situation. The doctors have told him if he has another recurrence, there is nothing else they can do. However, his response to that is, "Based on what you know now. There may be something else that comes along between now and then." Exactly!

The character in the photo above chose one of three options that spring night after being in an earlier situation in which he may not have lived another minute. Whatever the reason he traveled into the barn, I know that because he did, he enjoyed a rich life for another 12 years. I know because of his decision, my life was enriched. I like to think that the expression on his face in the picture above is one of happiness and gratitude.  

When I think of him and the person I spoke of above, I find answers to the decisions I would make if there was a recurrence.

"And that has made all the difference."*

*"The Road Not Taken" - Robert Frost

Wednesday, April 10, 2013

Come Visit And Talk For A Spell

Almost 15 years ago to the day, I was visiting my grandmother (she's the one on the left, with the headscarf, in the above picture). Unbeknownst to me at the time, she would would pass away a month later. In her earlier years, she wrote a weekly column for the local newspaper, sharing the news from Sinclair Ridge, WV. She would hand write the article on Sunday evening, then drop it in the mail on Monday for publication in the paper that hit the newsstands on Friday. Most of the columns detailed the comings and goings of the residents of the area, but sometimes would detail the recent purchase of a new bovine on a local farm.

In addition to her column writing, she would faithfully write a letter to any and all of her family and friends that would write to her. Again, on a weekly basis, as long as you replied to her previously sent letter.
Once I moved away to college, I would write to her to let her know how things were going, not necessarily on a weekly basis, but on a regular basis of at least once a month.

As she got older and was unable to write, the regularity of my letters to her dropped off and ultimately stopped. During my last visit with her, most of the visit was comprised of telling her what was happening outside of the nursing home where she resided.There wasn’t much two way conversation, as she was not physically well and unable to communicate effectively.

Until…as I was leaving and finished saying, “See you next time, Grandma,” she responded with, “You could write to me more often.” At the same time, I swear I saw a grin come across her face. Those were her last words to me.

Last Monday evening, I paid a semi-regular visit to the folks in the Bone Marrow unit where I was treated in 2009. They always are happy to see me (or at least do a good job of acting like it). They never fail to say, “You look great!” They say that, but if George Clooney was standing next to me, they wouldn’t notice whether I looked great or not. Maybe it has something to do with the fact that I take them treats when I do visit them.

During the visit, one of the nurses told me that very few patients ever come back to visit. I asked what their opinion was as to why most patients do not return. I think it may be due to the fact that many of their patients are from out of town and would have to make a two hour round trip to visit. However, they said that once most patients are done with the process, they want no reminders of it. 

I understand completely. When I am on the floor of the unit, I can look down the hallway and see the room that I was in when I was a patient there. However, I really have no desire to step back in that room just for old times’ sake. I will, however, step into any other room on the floor to talk to a patient who wants to talk to someone else who has “been there, done that.”

Regarding going back to see the nursing staff every so often, it seems unnatural to me not to do it. They have spoken that it reinforces their commitment to their careers when a patient who is doing well comes back to visit. It is a physical manifestation of, “Well done, good and faithful servant.” Even if that patient is the physical specimen that is myself.

I go back because it is fun to see them. I go back because it is a reminder to me that there are glimpses into heaven on THIS earth.

I go back because I never want to hear them say, “You could visit with US more often.”

Sunday, March 17, 2013

Was Wondering, But This Explains It

Way back during the time of the "Alien Sabbatical," I spoke of the importance of and how to donate blood.

Soon after the arrival of the alien, I received a routine call from the local blood donation agency here in Richmond. As I have mentioned in the past, I was on the list as a regular platelet donor, so I would receive calls from them periodically when I hadn't made a regular donation.

During the call, I explained to them that I had been recently diagnosed with cancer and would be unable to continue my donations. During the call, they responded with, "We understand. See you in 5 years when you are cured."

During one of my regular appointments with the oncologist after I had been declared "cancer free," and my platelet count was not only back to normal, it was back to counts higher than they had ever been, I said to my oncologist that I would go donate platelets. She replied with, "You will never donate blood or platelets again." I took it as her being protective and didn't question her about it.

However, I came across this article in CURE magazine today and it explains it. Seems as if us blood cancer folks are on the "bad list."

Guess that puts the pressure on you to donate in my place.

In spite of all that, "

Tuesday, February 5, 2013

"I Have Lived In The Darkness For So Long" *

Last Sunday evening as I watched the Super Bowl, early in the 3rd quarter I had no idea why the game had stopped, why the announcers had quit talking and why the lighting in the Superdome appeared different. As I continued to watch, it became clear as to what was going on. The lights came back on, the game resumed and America was once again the land of hope and promise.

This evening at 6:00PM, I turned to CNN to see if there was any more news about Ethan in Alabama. Instead, the second story of the hour was about how the lights went out at the Superdome and the pending investigation as to why. The delay in the investigation is partially attributed to the fact that Beyonce's people are not offering any input at this point.

I don't care. I really don't. The lights went out. They came back on. The game resumed. No one was hurt.

But there is suffering and gnashing of teeth over the power outage. In spite of that, I still don't care. 

Watching the halftime spectacle, I thought to myself, "So we saw the Sandy Hook kids paraded out in a feel good moment, and then Jennifer Hudson took over. Right now, who is saying to themselves, the Sandy Hook kids part of all this was the most amazing thing of the day?"  

During the last few years, I have caught myself getting choked up over things that emotionally affect me. I must confess that the appearance of the Sandy Hook kids didn't choke me up. It didn't because I felt they were being used. However, if during halftime, there would have not been a glitzy show but rather a statement made that instead of promoting someone who was doing just fine financially, the millions of dollars that would have been spent on the show would be directed to helping those who were outside the stadium wondering how they were going to keep the lights on at their house next month, feed their children, or pay their medical bills so they can continue to be treated, I would still be choked up as a result.

When I think of how other societies look at our society and feel rage towards us, I wonder if one reason is because of the lip service, but lack of action we pay to tragedy. 

"I was a-trembling, because I'd got to decide, forever, betwixt two things, and I knowed it. I studied a minute, sort of holding my breath, and then says to myself: 'All right, then, I'll GO to hell.' "
Adventures of Huckleberry Finn - Mark Twain

* From the musical, "Big River." Music and Lyrics by Roger Miller

Monday, January 21, 2013

"We Said It Before And We'll Say It Again"*

I've seen the movie "The Bucket List" with Morgan Freeman and Jack Nicholson in it's entirety before. It was on TV again over the weekend. I watched the beginning of it this time and then got distracted to something else. That's how I roll sometimes.

This time, I really took issue with this part of the movie (forgive the commercial before the clip begins). While I think Jack Nicholson and Morgan Freeman give amazing performances, I don't really care for the inaccurate information in this part of the movie. Yes, although the Morgan Freeman character qualified that he was receiving a clinical trial treatment and also noted that different people have different reactions, it really wasn't a good, or necessarily accurate way to describe chemotherapy. As both men had different forms of cancer in the movie, the chemotherapy regimen would also be different.

Greg, relax, it's only a movie. True. But Oscar Wilde said it best in his 1889 essay,"The Decay of Lying." "Life imitates Art far more than Art imitates Life." 

I am concerned about how the general public obtains their knowledge of chemo and the impact of that knowledge on later decisions. I will admit, I feared chemo. However, I learned that if there was anyway possible that my reactions to chemo could be minimized, or even averted, the doctors and nurses were there with help. All I had to do was let them know I wasn't feeling well. I'm not saying everybody will have the same reactions, but I am not going the preach the gospel of "Fear The Chemo."

I will agree that chemotherapy is not the perfect method to treat cancer. However, it is the best method for certain cancers at this point in time. For myself, based on the location of the alien (nestled among my intestines), surgery and radiation was not an option I even wanted to consider, especially after I asked why they weren't an option. When I heard that a colostomy bag could be a potential permanent accessory if that route was even an option, I understood.

"Be careful, little tongues, what you say."

"Be careful, little ear, what you hear."

*Lyrics from, "This Was A Real Nice Clambake" from the musical, "Carousel" by Rodgers and Hammerstein.

Wednesday, January 2, 2013

"So Tell Me, What's In Store For You In 2013?"

That was a real question posed to me recently by my friend the other week.

I paused for a minute and responded, "You know, I do not make a lot of plans. I like seeing what comes my way and then seeing what kind of fun it turns into."

Had I known what was coming my way in October 2008, I would have worked hard to plan to avoid it. However, I can say there was fun involved. Some times, not so much, but overall, I have said it before (and forgive me for saying it again), it was the best time of my life in the span of the last 10-20 years of my life. And, it continues.

I realized today that 2013 just happens (not planned that way) to be the last full year that I will be considered in remission. In August of 2014 I will be considered as "cured". Beginning in 1974, I can tell you that the most memorable years in my life started that year and then took place every 5 years since that year. I won't list them here, but I can recite the events of those specific years. The last "big year" was 2009. Wait Greg, wasn't that the year you had a couple bone marrow biopsies, 3 single day chemo treatments, 3 chemo treatments that involved one day in the clinic + an overnight hospital stay, the stem cell transplantation chemo, countless platelet transfusions, immune system at a level that placed restrictions on you that you weren't really happy about, and the possibility of surgery that would have had you spending New Year's Eve in the hospital?

Yup, you are correct! 

I look back on 2009 with this view. My faith background speaks often of Heaven. My view of Heaven changed in 2009. In my earlier years, I regarded Heaven as the final reward to a well lived life. But there is a often recited prayer used in my background that contains the words, "Your kingdom come, your will be done, on earth as it is in heaven." With that said, that is why I consider 2009 a great year in the 5 year cycle. I glimpsed into heaven because of the people that surrounded me. Their work was the fulfillment of those words in the prayer.

That is my "plan" and prayer. To see that others get a glimpse into that same window that I did. Because there are glimpses of heaven here on earth, as it is in heaven. 

I do have plans for 2014 (the next year in the "5 year cycle"). Come back soon and I will fill you in. Trust me, it WILL involve a party!

And here's a hand, my trusty fierce,
And gie's a hand o' thine,
And we'll tak' a right guid willie-waught,
For auld lang syne.
For auld lang syne, my dear,
For auld lang syne