Call Me Irresponsible

Friday was my last scheduled annual follow up appointment at MCV as part of the protocol that was established upon my release in August 2009.

For the first three years, the protocol involved semi-annual scans, bone marrow biopsies, blood work, and pulmonary function testing. After the third year, the testing was to be scheduled once a year.

Literally and figuratively, the testing is a pain in the butt.

Last year, I presented to the doctor who met with me that I didn't think the testing was still necessary. My logic was 1) I really didn't want any additional radiation to enter my body via the CT scan process, 2) I hadn't been experiencing any of the symptoms that I recall all too well that took place prior to the initial diagnosis in October 2008, 3) My blood work was normal for the last 3 years, 4) As my maximum out of pocket liability had doubled since initial diagnosis, I was not interested in adding additional financial obligations to my balance sheet.

The doctor agreed but did say that they may do one final scan this year as a final reassurance. At the time, I thought to myself, "That gives me a year to talk them out of it next year."

I met with the director of the unit this year. With that said, I resigned myself to the fact that the waiving of the final testing may be more difficult to obtain. However, after consulting initially with a Fellow who agreed with my logic but said the director would have to sign off on it, the director agreed to waive the final testing.

It wasn't because he was playing fast and loose with my health, but rather, he explained that patients with my initial diagnosis are most likely to experience recurrence within the first 2.5-3 years post treatment. That, combined with my current health and blood counts allowed him to waive the testing with confidence that it was no longer needed in my case.

September 26 is the last meeting of torment with my regular oncologist. After that, the process of electing her to sainthood will most likely begin.

Please Return Chair Backs To Upright Position

5 years ago today, my 4.7 million stem cells came back to me.

August 15 - final visit to MCV for annual peek under the hood.

September 26 - final visit to patient and tolerant oncologist.

The Final Countdown

The picture below is from the Church Hill Irish Festival in Richmond VA that I attended on Saturday. The last time I attended this event was in 2009 (see if you can spot something humorous in the photo that I didn't spot when I took the photo, but saw it afterwards).

After attending the Festival, on my way back to my car I saw this view. The building with the white horizontal lines is where I "vacationed" for almost 3 weeks in the summer of 2009.

On March 20, 2009, I met with the oncologist to discuss the potential of continuing treatment via the stem cell transplant method. 

On March 21, 2014, I met with the oncologist for one of my regularly scheduled appointments that are scheduled every 6 months. All clear. The blood work report was one of the best since the craziness all started.

Before leaving the oncologist's office, my next, and most importantly, FINAL appointment was scheduled for Friday, September 26. 

How should one celebrate?

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."

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"

"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

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