Thursday, December 31, 2009

Greg: "Let's go."

Them guys:"We can't"
Greg:"Why not?"
Them guys: "We're waiting on scans that glow." - with apologies to Samuel Beckett

















Heard from the hospital and I am scheduled for a meeting with the doctor on Monday at 10:30AM to discuss the scan results. When they call you and tell you that they want to meet with you, that can be a call that generates a "Oh #$%@" reaction. However, they did state that I wasn't to be concerned that the doctor wanted to meet with me.

They said that it was because he hadn't had a chance to review the scans yet and would do so in person on Monday.

I'll make peace with it over the weekend.

I'll get back to you Monday afternoon.

Wednesday, December 30, 2009

Nuthin' Yet

For your patience in waiting with me...


An 85 year old couple, having been married almost 60 years, die in a car crash. They had been in good health the last ten years, mainly due to the wife's interest in health food.

When they reached the pearly gates, St. Peter took them to their mansion, which was decked out with a beautiful kitchen and master bath suite with Jacuzzi. As they "oohed and aahed", the old man asked Peter how much all this was going to cost.

"It's free," Peter replied, Remember, this is Heaven."

Next they went out back to see the championship golf course the home backed up to. They would have golfing privileges every day, and each week the course changed to a new one representing the great golf courses on Earth. The old man asked, "What are the green fees?"

"This is heaven," St. Peter replied. "You play for free."

Next they went to the clubhouse and saw the lavish buffet lunch with the cuisine's of the world laid out. "How much to eat?" asked the old man.

"Don't you understand yet?" St. Peter asked. "This is heaven. It's free!"

"Well, where are the low fat and low cholesterol foods?" the old man asked timidly.

"That's the best part...you can eat as much as you like of whatever you like and you never get fat and you never get sick. This is Heaven."

The old man looked at his wife and said, "You and your stupid bran muffins. I could have been here ten years ago!

Tuesday, December 29, 2009

PET Scan-Done

Finished with it this AM.

Now, just waiting for the results from the Doc.

I should receive that info tomorrow morning.

When they asked me prior to the scan if I was diabetic, I replied, "For at least a week after Christmas, I imagine most everyone is."

I promise to wait patiently for the phone call tomorrow.

Thursday, December 24, 2009

Greg - 1, Polyps - 0

No polyps to cause concern in the colon as per yesterday's colonoscopy. They even said that I didn't need another one for 10 years.

While waiting for my ride to pick me up, I had a western omelet bagel at the bagel shop in the hospital. How great it was to eat again.

Seriously folks, I know the whole prep thing for a colonoscopy can be dramatic and exhausting for some folks. I did OK. Wasn't crazy about the initial taste of the Go Lytely, but I made peace with it after the 3rd glass. As far as the intended results of the beverage of choice, chemotherapy gives you a spectrum of bowel movement side effects, so the effects of the Go Lytely to me were "been there, done that."

What I want to say is, some of the drama that is associated with a colonoscopy can prevent others from getting this procedure if the stories of your own personal experience are presented in dramatic fashion. We don't need that. Please remember, your reactions to a medical procedure WILL differ from another person's reactions. I have friends, who have had colonoscopies in the past, that shared their stories. Their demographic is made up of a wide range of folks, from a male in his 20's to a female in her 70's. They recounted that it wasn't that awful of an experience. Funny, the most dramatic stories came from other acquaintances that were mostly healthy males who take pride in their physical appearance and work out regularly. Tough guys......

I was speaking to a nurse yesterday that has not had a colonoscopy because she's uncomfortable with her colleagues gazing at her backside. I promised her that I would tattle on her to some other doctors so they would motivate her to get a colonoscopy.

I went with the understanding that I would be "out of it" during the actual procedure. I wasn't. I was able to see the screen the whole time. It was a bit uncomfortable, but it really didn't last that long. Folks that I talked to afterwards, who have had the procedure and were out of it during the procedure, responded with, "Seriously, was it awful?" It wasn't the happiest ride in the park, but it wasn't the scariest thing that's ever happened either. The great news about not being out of it was that my recovery and release time was shortened. I was in and out (no pun intended) in less than 2 hours.

Again I will say it. I don't intend to minimize or trivialize anyone else's experience. I empathize if it was difficult for you. However, if yours wasn't all that bad, don't tell fish stories.

I really believe the most medical professional are altruistic and are guided by "Primum Non Nocere."

Wouldn't hurt to make it universal across humanity.

BONUS INFO:

1) It's cool to run into some of the caregivers I've met, in a setting other than the clinic or hospital, and have them say, "You look great." What's cool about it is the ability to look back at them and say, "It's all because of your work!"

2) I bought a bottle of wine today for a friend and got carded. That's really cool!


"And so this is Christmas
For weak and for strong
For rich and the poor ones
The world is so wrong
And so happy Christmas
For black and for white
For yellow and red ones
Let's stop all the fight"
- John Lennon

See you next week sometime....

Wednesday, December 23, 2009

Powerful

A friend of mine told me yesterday about a family from my church that I know about, but with whom I am not acquainted.

In her freshman year of college, their daughter Lindsey was diagnosed with kidney cancer. You can read her story here.

Last weekend, they received news that their son, Robbie, suffered a stroke while living in Florida and he passed away on Monday of this week.

My friend passed on this comment: "Even now, Gail (the mother) states that in Robbie’s death, others will be experiencing Christmas miracles as his organs are being donated."

This family truly knows how to present their best gifts to the world. Even in the midst of their grief and tragedy.

Tuesday, December 22, 2009

Just Like Rasslin



Yesterday was a very active day with communication back and forth between myself and MCV.

The surgeon that I met with last week has, in addition to tomorrow's colonoscopy, ordered a PET scan and a unltrasound guided biopsy of the lump that he noticed last week.

I spoke to the oncologist at MCV later on in the day and he feels based on the details of last week's ultrasound of that lump, that there is no cause for concern and that in this case, "sometimes a lump, is just a lump," like the ones that are all over my body.

However, since I now have a history of NHL, the surgeon wants to check it out. If it were located elsewhere on my torso, it may not be so much of a big deal, but since it is near the lymph glands in my neck, hence his concern.

The PET scan is scheduled for the 29th and the biopsy is yet to be scheduled. Another effect these tests have is that my surgery for the 30th has been postponed. The reason for the postponement is not that the tests are taking up the short amount of time between now and then. Rather, it's because if the tests show that the lump is cancerous, then we would need to address it with treatment options, and the surgery would not be as high priority for now. When I heard that news, I was bummed out because I just want to get all this stuff over with. However, it may have been the perfect pill that I've been needing.

Prior to be notified that the surgery was being postponed, I was having a discussion with a friend about this stuff making me weary mentally. He replied, "Greg, you need to understand that everything you are being tested and scheduled for is preventive. None of these thing are because you HAVE cancer." Wise words.

After thinking about his words, I realized this is like them REAL live professional wrestling matches where the hero starts out strong, starts getting roughed up and then in a miracle finish, comes back to win the match in heroic fashion.

Guess it's time to step back into the ring. I promise you that I won't put on one of those silly ultratight spandex costumes.

Monday, December 21, 2009

"Wond'ring Aloud"

Picked up the "magic solution" for the colonoscopy prep on Saturday from the pharmacy.

The pharmacist told me that when they called it in for insurance company approval, the insurance company disagreed with the dosage amount. The pharmacist said she had to spend time convincing the insurance company that the dosage amount was correct and proper for my particular situation.

She said it was a very frustrating call.

So.....a colonoscopy is a procedure that could eventually prevent the payment thousands of dollars for the insurance company and they are fighting with the pharmacy over a difference of about 60 dollars worth of diagnostic medicine. If you work for an insurance company and can explain the logic of the conversation that the pharmacist had to have with the insurance company, I would appreciate your input.

I'm not disputing, I'm admitting my ignorance.

Trust me, I'm not excited about ingesting 4 liters of a solution that is intended to do what it does. However, if it saves grief down the road, "Thank you, please may I have another."

By the way, I may not be all that conversational tomorrow evening after 6PM and then Wednesday after 6AM.

"Wond'ring aloud --
will the years treat us well...
..And it's only the giving
that makes you what you are."
- Jethro Tull

Friday, December 18, 2009

I Wish You....

I take walks through my neighborhood - usually in the morning after I wake up and before I go to work. I did that this morning.

I also walked tonight when I got home from work. Just as the snow started falling and dusting the ground and road surfaces. Just after people had turned their Christmas lights on for the night. Just as I put my headphones in my ears and started listening to one of my favorite Christmas albums on my IPod - "Christmas Adagios." It's a collection of "quiet" arrangements of familiar tunes. One of my favorites on the album is a version of "Amazing Grace" that blends into "Silent Night."

It was during that tune, while only a clarinet was carrying the tune, that I heard these words in my head:

"I wish you Christmas.

Not with resentment over the way you think a retailer wants you to observe Christmas.

But with the soul of a single parent who works a second job at that retailer to make extra money to wish their children Christmas.

Not with the pressure to find the perfect Christmas tree at the "cut your own" farm that will make the house smell just right and will fit in the room like it was designed for that space.

But with the joy of taking the cold air into your lungs and feeling it awaken parts of you that have laid dormant over the summer. Then, after seeing the tree in the middle of the field, wondering why even though others have cast eyes upon it, it was never chosen, though it is truly perfect.

Not with the solitary possession of the holiday as if it is yours to own.

But by being universal with distribution of grace that comes from knowing that the holiday has taken ownership of some secular traditions throughout the years, thus enhancing it's glory.

Not with the concern in hoping the Department of Transportation clears the highways of the fresh fallen snow so that you can finish your pre-Christmas day chores.

But with the wonder that in the total amount of the snowfall spread over the entire region, no two individual contributors to the wintry blanket are the same.

Not with the melancholy that follows the calendar day after, in mournful acceptance that Christmas is over.

But with the mirth of Christmas morning in knowing that you've received a booster shot of Christmas to carry you for the next year.

Not with the concern of selecting the perfect present.

But with the wisdom and peace of knowing you've presented your best gift.

I wish you Christmas."

Thursday, December 17, 2009

Why Thank You, Doctor!

I did say that today, but not to a doctor. I said it to a radiologist who was doing an ultrasound of the lymph node areas around my neck. During the ultrasound, she also looked at my thyroid and while looking at it, she said, "Let it be known, you have a pretty thyroid!" There you go! Shame I can't post a picture of it here.

I've made peace with the surgery thing and understand the benefits of it vs. radiation. Radiation could cause some toxicity issues and do damage to surrounding organs (namely, intestines) that could be difficult. Surgery will require a portion of the small intestine to be removed, but the surgeon is assuring that it's not a real issue.

Everyone, doctors and nurses that I have talked to agree surgery is the best option.

I had made my mind up that if the surgery was able to be scheduled sooner than later (i.e. within the next week or two), I would consider it Providence and move ahead with it. As it is scheduled, I am scheduled for surgery on December 30 sometime most likely after mid-day. Then, I will be in the hospital for 3-5 days and then a recovery time at home of about 7-10 days.

In addition, the surgeon requested that I have a colonoscopy before the surgery and it is scheduled for December 23rd. So...we'll have that out of the way and I understand that there is lots of drinking the day before...so Merry Christmas!

The reason I had an ultrasound today is that while the surgeon was examining me, he had concern about a bump near my left clavicle. He ordered an ultrasound on it and it came back clean. What they were looking for was to see if there were any blood vessels feeding into the bump. If there were, that would be a bad sign. However, there weren't any blood vessels feeding it. He still may give a closer look at it before or during the surgery if it is still of concern at that time.

I do have several lumps like that all over my body. They have never shown cause for concern during any of the CT or CT/PET scans. I remember my maternal grandfather and an uncle on the same side of the family having their own personal collection of them. Crazy.

That's today in a digested form. I'm doing much better stress wise this evening than I have in awhile, but I'm sure the anxiety will start to perk upward over the next couple of weeks. A month from now, it's in the past.

I told my friend that went with me today, "This ain't what I bought a year ago."

"...Into the woods-
You have to grope,
But that's the way
You learn to cope.
Into the woods
To find there's hope
Of getting through the journey.

Into the woods-
Each time you go,
There's more to learn
Of what you know..."
-Stephen Sondheim

Tuesday, December 15, 2009

"All That You Do, All That You Say...."

Title lyrics today from "Eclipse" on Pink Floyd's "Dark Side Of The Moon" album.

Until I have news on Thursday afternoon after the consult with the surgeon and doctors, I got nothin. Kind of like when the Apollo astronauts were on the dark side of the moon and couldn't communicate with NASA.

Hope you have great days between now and then - and then a bunch after that.

Monday, December 14, 2009

Worth Sharing

The pastor shared this story as part of his message at church yesterday. I'll let it speak for itself:

An old Cherokee is teaching his grandson about life. "A fight is going on inside me," he said to the boy.

"It is a terrible fight and it is between two wolves. One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego." He continued, "The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you - and inside every other person, too."

The grandson thought about it for a minute and then asked his grandfather, "Which wolf will win?"

The old Cherokee simply replied, "The one you feed."

Sunday, December 13, 2009

Take 2 Anxiety Parts....

...Got rid of two in the last few days. Found the Seasonal and H1N1 shots and got both of them. I did have anxiety about not being able to get them in time.

Also, the antibody blood titer test was taken on Thursday when I was in for my "booster juice" infusion, so I should hear soon about which vaccines I get to retake.

If you want to take a shot at me, now is the time. Platelets are low - high enough to drive and do physical activity - but still at a level where bleeding doesn't stop as quickly as it does at the normal level. The gentleman that gave me the H1N1 shot noticed that. I also noticed there was more blood on the bandage that they put over port after the infusion on Thursday. What the doctor recommends when I'm working in the yard is to wear gloves and not leave any area of skin exposed to cuts, etc.

As I understand it, even though the last chemo treatment was in July, the body will still take up to a year to recover from some of the side effects.

Warning, I am probably a little crankier now than I been in awhile. The crankiness should start to subside later on in the week as the news and information roll in, but I do get annoyed pretty easily - not at everything - just at some things. To comfort you so that you know I haven't gone over the edge or anything, here's a story for you.

I was using my mower to clean up some leaves in my backyard yesterday. I hit a tree root that was sticking up and it stopped the mower and bent the blade. Normally, I would have run to the hardware store and bought a new blade and finished the job. Instead, I said, "I take it as a sign that it's time to stop." The yard isn't finished. I'll finish it someday. But for now, if someone doesn't like the way my backyard looks, they can clean it up for me.

I guess there is a lesson in there somewhere about not rushing to judgment or getting cranky too quickly.

Saturday, December 12, 2009

This May Work

When I was talking to the doctor the other day about surgery, I said, "Just another scar to add to the collection."

She replied, "Yes, and it will be the biggest one on you, so it will be the most impressive."

I asked her if she thought I should make up a story that I received it from an injury while playing the 1979 NCAA Football National Championship Game.

She said, "Go for it if you can make it work."

Friday, December 11, 2009

"Because, Because, Because, Because, Becauuuuse...."*

Had a good conversation with my regular oncologist yesterday about the whole "surgery vs. radiation" thing. Let her review my list of questions.

I asked her why she thought surgery would be a better option than radiation. The overwhelming reason for it is that it would present less danger for damage to surrounding organs (mainly the intestines) than would radiation.

She spoke very highly of the surgeon and said she felt comfortable that if he said it was a good option, she trusted his judgment. Since she was the one that initially raised a flag about surgery, I'm comfortable with her assessment now that some time has passed. Now, it's just a matter of grilling the surgeon next Thursday.

Booster juice infusion went OK. No side effects this time.

Spoke to the doc about the infernal cough. She suggested that it might be a sinus drip and recommended Claritin. Told her I had no congestion, but she said that there is a reason I am coughing and that it most likely is a chemo created sinus drip and that is why I have the worst coughing fits when I lay down to go to sleep. Hope it works. Frankly, it had gotten to the point where it was beyond annoying.

As I was finishing in the chemo room yesterday, I noticed a new patient entering the room. I would guess she was in her early 60's. She came into the room with her husband and son and then sent them out into the waiting room to wait for her to finish. She was troubled by what was to come. The nurses did a great job attending to her to make her feel comfortable. She's in good hands. She just doesn't know it yet. I wish I had taken some time to talk to her, but it would have interrupted what the nurses were doing. However, at the same time, a couple of other nurses and I were cutting up in front of her - not to ignore her, but to show her the "other part" of her treatment. I wish her well.

* - Harold Arlen and E.Y. Harburg

Thursday, December 10, 2009

"Booster Juice" Day

Today, I go in for the second IVIG infusion. Will be interesting to see how I react to this one. Last one, had some cold chills that they stabilized and I was fine. However, since it was the day after my biopsy, I was still feeling woozy to a small degree and felt out of it for a few days following. That's why I scheduled nothing until Sunday this time.

Also, will chat with the doctor about my surgery questions and will talk to her about this stinkin' cough that just won't go away. I'm losing my patience with it.

Called a friend yesterday to catch up. She had some serious medical issues herself a few years ago. She called me a couple of times this summer and I hadn't had a chance to talk to her lately. When I called, her husband answered and after I asked for her, he told me that she had died on Monday from lingering complications related to the difficulties she experienced the other year.

Bless her soul.

As I told another friend yesterday, it is the grace we experience from others that teach us to create "spaces of grace" around ourselves so that we can pass it on.

Fidelium animae, per misericordiam Dei,requiescant in pace. Amen.

Wednesday, December 9, 2009

What The Heck

A friend of mine sent this to me via e-mail. Thought it was too good not to share.

Mildred, the church gossip, and self-appointed monitor of the church's morals, kept sticking her nose into other people's business..

Several members did not approve of her extra curricular activities, but feared her enough to maintain their silence.

She made a mistake, however, when she accused Frank, a new member, of being an alcoholic after she saw his old pickup parked in front of the town's only bar one afternoon.

She emphatically told Frank (and several others) that every one seeing it there
WOULD KNOW WHAT HE WAS DOING !

Frank, a man of few words, stared at her for a moment and just turned and walked away. He didn't explain, defend, or deny. He said nothing.

Later that evening, Frank quietly parked his pickup in front of Mildred's house ... walked home .....and left it there all night.

"And the second is like it: Love your neighbor as yourself." What Mildred forgot...BE NICE.

Tuesday, December 8, 2009

Secretly Whining

There are some things that go through the mind that I will not post here. I can say I'm taking the compassionate route and not laying stuff on you that could be difficult. Mainly, it's because once I say it, it's out there and I'm not sure I'm correct in some of the conclusions at which I've arrived.

"Very often find confusion in conclusion I concluded long ago-o." You are correct, that's a repeat from a blog post from last year.

I will tell you that I am not as fired up at this very minute about being a volunteer in some form for cancer patients in my future. I will be later. Just not right now. The folks I talked to in the early going about the grand things I was going to do once I was finished with all of this would say, "Wait at least 6 months after things get back to normal for you and you have time to adjust before you start immersing yourself in any activities related to your cancer experience. If you start too early and you bail out, you'll let some people down." Wise words.

One thing I did conclude, and this is a very candid and honest statement, came from a question someone had the courage to ask of me in the early stages of all of this. They asked, "Have you thought about whether or not you may die from this and what are your thoughts on that?" I replied that I had given lots of thought to it and although I am not afraid of dying and I look forward to the day I die, I wasn't ready to do it right then. I expressed that there was still more stuff to do. That remains my position.

As far as why I'm not afraid of death, I think of Tim Russert. I had the opportunity to see him live on 3 occasions at The Richmond Forum. He was a very gracious, down to earth and humorous individual. When he died, I was saddened by his passing, but I rejoiced for him. My statement on his passing was, "Tim Russert finally knows 'the secret.'" In my mind, his first words in the afterlife were, "No Kidding!"(edited for the PG rating)

I was talking to the pastor at my church yesterday and told him that even though I was a bit weary mentally, I know that I have seen and experienced lots of things that are true miracles in the past year. Had you told me on October 27, 2008 what was ahead of me and the people and things I would experience, I may have replied in the same manner as Tim Russert.


“The fairest thing we can experience is the mysterious. It is the fundamental emotion which stands at the cradle of true art and true science. He who know it not and can no longer wonder, no longer feel amazement, is as good as dead, a snuffed-out can”
- Albert Einstein

Monday, December 7, 2009

"...With A Thousand Million Questions..."*

In no particular order....

If you have questions of your own, please post them in the comments section. I may be able to use them.

When would this surgery happen?
Will it be general or local anesthesia?
What are the general risks (i.e. internal bleeding, affecting other organs, etc.)?
Statistically, what is the likelihood of relapse without the surgery?
Statistically, what is the likelihood of relapse with the surgery?
What is the hospital stay time frame?
What is the recuperation time frame?
What does the insurance company have to say about all this?
Why is surgery the more preferred option vs. radiation?
Is there enough of a likelihood of relapse before my next set of scans (in February) to do this now instead of waiting until then?
Since it is lymphoma, is there the possibility of a rogue cell breaking loose and getting into the lymphatic system and starting a "cell division party" elsewhere?

"But in the grey of the morning
My mind becomes confused
Between the dead and the sleeping
And the road that I must choose." *
- The Moody Blues

Sunday, December 6, 2009

Betwixt and Between

Still working on them questions.

Here's the deal. I read my blog post from a year ago and shake my head at the energy, and maybe a little determination and resolve. Then I realize that at that time, I was thinking it would all be over by spring. It ain't.

That plays with the head.

Yesterday, I slammed a skillet against the counter top because it wasn't coming out of the dishwasher as easy as it should have. I threw something else down on the ground because I could feel it slipping out of my hands and I decided if it wanted to be on the ground, I would be a catalyst for it.

I'm keeping a close eye on the whole emotional and mental part of this and I already know what resources are available if it gets out of hand. I don't think I'm close to that yet, but I want to assure you that I am in control of that.

Then...I read blogs and stories from other patients who have dealt with cancer issues that are more traumatic and spread out over more time.

"Laughter and tears are both responses to frustration and exhaustion . . . . I myself prefer to laugh, since there is less cleaning up to do afterward."
Author: Kurt Vonnegut, Jr.

Saturday, December 5, 2009

Where In The World?

If you are reading my blog and notice some comments that make you say "Huh?", it seems that there are some folks out there that read blogs with less than noble intentions. I noticed a comment early yesterday that was posted by someone from Taipei and it was simply a series of links to buy apparel with athletic logos. I guess once I hit a certain number of posts and reach a level of visitors, the trolls go fishing. The beauty of this being MY blog is that I can delete those comments at will...and I did.

I saw Skippy yesterday and thought I would post some pictures for you.

This one is of his feet on American soil (actually asphalt):










And this one is of he and I greeting each other:










He returns to Baghdad next week and then will be back in February to go on a cruise with his family.

Tomorrow, I share some of my thoughts about the upcoming surgery consultation. In some ways, one wants to move ahead quickly with things and in other ways, it's good to have time to "process" things before you need to make a decision about something like this.

Friday, December 4, 2009

Getting To Know You

December 17 at 9:30AM, I am scheduled to meet with the Oncology Surgeon at MCV for our discussion.

He has a pretty impressive approval rating from his fellow doctors. Last year, he was selected as the top Oncology Surgeon in the city of Richmond by his peers. I'm looking forward to meeting him.

After he and I meet, I then will meet with the folks from my "2009 Summer Vacation Spot" for some discussion with them. Not sure how my vote will go that day.

I'm going to talk to my regular oncologist next week when I go in for my IVIG infusion about my questions that I will ask that day. A concern she had - and I may be repeating myself - when the last set of scans came back was that the surgical option my cause a rogue cancer cell (if there is one hiding in there) to go on it's way through the lymphatic system and create havoc somewhere else.

And until now, I thought buying a house was a big decision.

It makes me tired sometimes. This is the first week since the house arrest lifted that I have been in the office or meeting with clients for the entire week. I'm getting pretty tired. I'll be alright. No alarm will be set on Saturday morning.

"And oh, when I'm old and wise
Heavy words that tossed and blew me
Like autumn winds that will blow right through me
" - Alan Parsons Project

Wednesday, December 2, 2009

"...Clip, Clip, Here. Clip, Clip, There..." *

Short on time this morning, but I will tell you that I talked to the MCV folks yesterday and they are recommending a surgical option. Waiting for a call to set the appointment for the consultation with the doctor down there in which we'll review my scans and then I'll barrage him with a load of questions.

I will tell you that the surgery option is not a done deal in my mind. There will be plenty of discussions after I meet with the MCV doctor including a discussion with my regular oncologist.

I'll give you more details and things that I'm thinking about in the next post.

A friend of mine had an observation yesterday about all of this. She said, "This has to be frustrating. It's like taking your car in for an oil change and then being told you need new breaks and a transmission replacement."

Funny.

* Songwriters: Harold Arlen, E.Y. Harburg

Some Of The Greatest Hits

No word yet from the MCV folks. Will contact them soon.

A little medical information for you. I heard about the possibility of this and am finding it to be true. I thought that since I had a 100 day "house arrest" period and was taking a 2 mile walk on almost a daily basis, I would not have any issues. However, I must confess, I do get fatigued by day end. Nothing too awful and I sleep well at night. It's just going to take a little while longer to get back to full steam. Pending the doctor's recommendations for further treatment and what that treatment is, the time frame may stretch out a little longer.

What I'm doing is not extending myself beyond what I think I can do. I'm not scheduling everything I can on my calendar and letting the chips fall where they may. Instead, I'm scheduling sensibly. So...if I tell you I will do something and be somewhere, most likely you will see me. However, if I ask for a "rain check," you get the picture as to what I'm doing. Don't worry, I'm not "falling down tired" or anything, just working on getting back to using all of the pistons in the engine. It's all good.

It's interesting to look back to last year's blog posts and see what I was doing a year ago. I was attracted to the comments left by others. Here are some from last year that I thought needed sharing again.

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly." - Buddha ...

"The secret of health for both mind and body is extra spicy chicken wings, beer, televised sports, and a semi surly soccer playing waitress."

"All will be well, and all will be well, and every kind of thing will be well."

"I know I'm not a doctor, but I'm not sure I can agree with the prognosis that you are mentally ok. I think I need "ok" defined." ;)

"First day checking out the blog and comments...your friends are funny." =)

"...don't they give you a house in Michigan if you agree to stay in the state now?"

"...a site listing causes it said that lymphoma had a "twenty year history linking it to black hair dye"! Does it have to be Amy-Winehouse -shoe-polish-black or does that also apply to medium golden brown?"

"Getting tossed out of a chemo ward might be a noble goal indeed. Good luck with that."

Accept the pain, cherish the joys, resolve the regrets; then can come the best of benedictions - "If I had my life to live over again, I'd do it all the same”
- www.thinkexist.com

Tuesday, December 1, 2009

Bad Form On My Part

After I read my post from yesterday, I realized I wasn't very clear. By reading the post, one could fairly assume that the MCV folks may have detected some residual cancer still in me. There isn't.

The reason for the potential treatments or surgery is to lessen the chance of relapse in the existing scar tissue (i.e. calcified tumor) area.

As of the time of this post, I haven't heard back from the MCV folks yet and I'm good with that. Not that I want to delay anything. To me it means that they are taking their time and doing good study on the situation. That sits well with me. This week, at some point I've already designated, curiosity will take over and I will call to follow up. It's part curiosity and part "being a patient taking an active role in their care."

Below, snow video as promised. It was taken on Friday, November 27 just west of Friendsville MD (where I spent Thanksgiving).

"I'll soon be there with snow
I'll wash my hair with snow
And with a spade of snow
I'll build a man that's made of snow
I'd love to stay up with you but I recommend a little shuteye
Go to sleep
And dream
Of snow, snow, snow, snow, snow"
- Irving Berlin

video

Monday, November 30, 2009

Home And What's Next

Good stuff first. Mr. Bo Baker had a set of follow up scans last Wednesday and still remains cancer free.

Made the trip without incident. Got out and stretched the legs several times vs. in trips past, I would have filled the car with gas before leaving and driven straight through for 5 hours. Coming back, had to wash road salt off of the car as I did see snow this weekend. Good stuff. Will even post a short video of it on here in the next day or two.

Talked to one of the MCV doctors on Wednesday AM and he told me he had looked at my scans and the biopsy results and was still considering the next step. As mentioned in the past, there is the low-dose radiation option to eliminate anything that could be hiding under the radar. He also mentioned that there may be a surgical option for the same reason. He is consulting with the surgeons at MCV and will get back to me possibly today or tomorrow.

There are potential complications with either option. With the radiation option, there could be damage to organs that are located close to the area that would be radiated. The organs that are of concern are intestines. With the surgical option, bleeding could be a complication as there would be multiple vessels involved. Also, since it is a lymphoma tumor, there is the possibility that some of the alien cells could break loose and move into other areas of the body.

He did mention that based on the information, there is no concern that we have to move ahead immediately.

When he does come back to me with the options, I will have multiple questions including, "What if we wait until the next set of scheduled scans which would be in February and see what the level of activity is then?"

Then, of course, there is the whole insurance consideration thing. As I have reached my maximum co-pay for the year, if I move ahead before year end, then it's easier to deal with financially than it would be after the first of the year. I'm not telling you that because I'm asking for a fundraiser. I'm telling you that because it's a reality and part of all of this that I promised to share with you. I never really paid much attention to health care insurance options prior to all of this. I feel I'm a little wiser now about it as a result. I know there is lots of debate about the current health care bill, but it needs to be discussed and all options need to be put on the table for discussion. Similar discussions about issues with passion happened over 200 years ago in this country. Not listening to an option because of your bias to an individual or an idea is not democracy. There are ideas out there that I'm not wild about, but they deserve to be put on the table for consideration.

Also, moving ahead before year end could bring any momentum I've started to build up after being released from "house arrest" to a screeching halt. Especially the surgical option.

Adulthood, and making decisions for yourself is highly overrated.

An expression that assures me came to mind yesterday. I may have said it here before. I'm saying it again.

"That which is not natural, is not permanent." - Source unknown...it could have been made up by me.

Wednesday, November 25, 2009

He Went Thatta Way



Taking the first really long road trip in over a year. Heading to Western Maryland to spend time with family over the Thanksgiving weekend. Hopefully, no radar to encounter. However, there may be snow to see. Happy Thanksgiving to you.

Last year, my mailman delivered the mail late in the evening. Last night, as I walked to the mailbox after I got home from work, I was reminded of last year. The ghosts of last year aren't going away quietly, but they will go away. Next year, I will remember the "Music In The Old Church" concert from last weekend along with other stuff that is going to pop up in the next year. Hopefully, there will be a party in the back yard when the weather gets warmer.

No word yet from MCV. For now, I'll wait.

Taking a blog break for the weekend. See you next Monday.

After getting Pope Benedict’s entire luggage loaded into the limo, the driver notices the Pope is still standing on the curb.

"Excuse me, Your Holiness," says the driver, "Would you please take your seat so we can leave?"

"Well, to tell you the truth," says the Pope, "they never let me drive at the Vatican when I was a cardinal, and I'd really like to drive today."

"I'm sorry, Your Holiness, but I cannot let you do that. I'd lose my job! What if something should happen?" protests the driver, wishing he'd never gone to work that morning..

"Who's going to tell?" says the Pope with a smile.

Reluctantly, the driver gets in the back as the Pope climbs in behind the wheel. The driver quickly regrets his decision when, after exiting the airport, the Pontiff floors it, accelerating the limo to 205 kph.

"Please slow down, Your Holiness!" pleads the worried driver, but the Pope keeps the pedal to the metal until they hear sirens.

"Oh, dear God, I'm going to lose my license -- and my job!" moans the driver.

The Pope pulls over and rolls down the window as the officer approaches, but the officer takes one look at him, goes back to his motorcycle, and gets on the radio.

"I need to talk to the Chief," he says to the dispatcher.

The Chief gets on the radio and the officer tells him that he's stopped a limo going 205 kph.

"So bust him," says the Chief.

"I don't think we want to do that, he's really important," said the officer.

The Chief exclaimed,"All the more reason!"

"No, I mean really important," said the officer with a bit of persistence.

The Chief then asked, "Who do you have there, the mayor?"

Officer: "Bigger."

Chief: "A senator?"

Officer: "Bigger."

Chief: "The Prime Minister?"

Officer: "Bigger."

"Well," said the Chief, "who is it?"

Officer: "I think it's God!"

The Chief is even more puzzled and curious, "What makes you think it's God?"

Officer: "His chauffeur is the Pope!"

Tuesday, November 24, 2009

Would You Believe....

On Friday, November 6, I got the "all clear" from the doctor to resume normal activities. On Saturday, November 7, I traveled to Annapolis MD to watch a marching band competition. At 12:09 PM on November 7, I was caught on radar breaking the speed limit in Washington DC. First day out....... Ain't that somethin'.

The folks at MCV are still reviewing my scans to determine if radiation treatment is recommended. It's not that they still see some cancer in there, they don't. However, they are thinking they may want to zap the area to prevent any recurrence. The have been talking to my doctor and are talking among themselves to determine what they want to do. I should hear something today. I'm glad they are taking their time and talking to each other about it.

Still waiting to have the testing done to determine what immunizations I will have to retake. I'm not sure, but I may have to wait until after any potential radiation treatment to get those. I'm going to confirm that with the doctor when I speak to her next.

As far as flu shots, I have not had either the regular or H1N1 yet. They are not available here at this point in time. Something about them not being available annoys me a bit. I don't think it's a grand conspiracy or anything, but communication is lacking about the availability of them.

Bo goes in for his next round of scans tomorrow. It's an anxious time. However, he is my role model when it comes to these kind of things. Rather than focusing on the fact that tomorrow is a set of scans for him, he is doing the following (per his mother's post on his Caring Bridge page): "Bo is focused on Wednesday for another reason. He has big plans for Wednesday night. It’s the premier of the new Ben 10 movie on Cartoon Network. Needless to say this requires pizza and cupcakes. His buddies from the cul de sac are coming over to watch the movie with him. They have all been counting down the days."

“He deserves paradise who makes his companions laugh” - Ancient Sacred Text

Monday, November 23, 2009

All Is Good

Skippy is in the U.S.

My friend's surgery went well on Friday and she is home recuperating.

The choral concert in which I participated, "Music In The Old Church" was tremendous and was a spiritual experience.

I'm traveling for Thanksgiving.

Saturday, November 21, 2009

Maybe Because

It's about the doctors, nurses and friends who helped me through the last year.

I was on the phone with one of the nurses from the clinic the other day and at the end of the conversation I said, "Congratulations to you." She didn't know of what I was speaking. I told her, "Your work contributed to my diagnosis on Monday and you should be congratulated for that." She thought for a moment and said, "Thank you. I guess you're right." I liked where her head was. Seems to me that she spends so much time with concern for a patient and then watching them celebrate when they get an "all clear," that she forgets to celebrate her own work. Maybe.

Monday evening, I made a trip to the grocery store. While there, I was in the middle of a bit of a traffic jam inside the store waiting for people to move out of one aisle so that those of us behind them could continue with our shopping. All of a sudden, a gentleman cut through all of us and went on to the next aisle he was targeting. My initial reaction was that of considering his level of extreme rudeness. Then I thought, "What if he just got a cancer diagnosis today? What really is going through his mind?"

That's what I promised to tell you about the other day. Chances are, statistically there is at least one other person, in an area where there are a large group of people gathered, who is dealing with a significant event in their life. It may be the person who cuts you off in the grocery store or displays some other action that annoys you. You don't know.

I read The Bible as one of the books to help me with my attitude towards others. I will never claim to be a perfect person as a result of the simple fact that I read it. If I was truly perfect, at least one of the books in there would be about me. To me, the overall message of The Bible comes down to two words. "Be Nice."

Maybe we analyze, complicate, judge and pontificate more than we simplify.

Parvis imbutus tentabis grandia tutus

Thursday, November 19, 2009

Will The Madness End?

Confirming that the blog will not end anytime in the immediate future. Reason is, there are still some steps to take in all of this and I want the information out there for folks to know if they need it. For instance......

Found out today how we move on to the re-immunization stage. There will be a "titer test" in my near future. Here's an explanation from a reliable source. For myself, we will be looking to see if any of the following antibodies are still in me: Rubella, Rubeola, Measles, Mumps, Tetanus, Polio, Hepatitis A, Hepatitis B Core Antibody.

Even though the type of chemo in the last round of chemo I received effectively does wipe out your immune system, there still may be some of the antibodies in my system. Interesting.

Also, I should know by early next week if there will be any recommendations to proceed with radiation treatment. As I have shared in conversation with others, even if the doctor (who I trust), recommends radiation treatment, I won't immediately sign off on it. He and I will review the location of the area that would be treated in relation to other organs in the body, the margin of error and if there is error, what the potential side effects would be. I'm not doing it out of resistance. It's from the knowledge I've gained. I don't regret moving ahead as quickly as I did last fall. I trusted my doctor early in the process. I was ignorant of what was ahead of me, but feel that my intuition served me well a year ago.

It is important for the patient to be well informed and to take an active role in the process. Caregivers appreciate it. For example, today I was following up on the timing of my titer testing with the clinic and the folks at MCV. I asked one of the nurses, "Am I being a bad patient by calling for the appointment to be set up and then asking for paper work to be sent from one location to another?" She confirmed that I was being a patient that they appreciate. There's a line one CAN cross and it's important to have the communication and self evaluation process in place so that there are no lapses or misunderstandings. It's a bit overwhelming at first, and depending on the level of activity required by all involved, it can start to make more sense as you travel further into the process. It's OK to not know what's going on. It's not OK to not care what's going on.

I'm not perfect at it yet. Nor will I be. I just want to get better at it. That's how I'll fight cancer in the future...by being good enough to help other's through their fight.

Remember a good friend of mine who is scheduled for some surgery on Friday. She's stood front and center for me since last year.

Wednesday, November 18, 2009

For Skippy

He's a fine American representing our country as a member of the diplomatic corps in Baghdad.

He's over there until next August.

However, he's on his way home for some R&R and to spend time with his family and treasured son - who is also a fine American.

A week in advance, give thanks that the world has people like Skippy.

Enjoy, buddy!

Tuesday, November 17, 2009

The Courage To Stare

I promised to post something different today, but I apologize.

Today was my first trip to DC to meet with clients since earlier in the year before I was restricted by the second wave of chemo. All was well and good. I even managed to make sure I packed everything I needed for the trip as I am staying overnight and returning home tomorrow. There was a bit of a "Welcome Back" party at the office of one client and it was great to see them. Was glad that the day proceeded normally.

I stopped by my brother's office to see him as I hadn't seen him since August. Since my original diagnosis, anytime he has seen me, I haven't had hair. I told him I wanted to stop by so he could see my hair and know what I looked like in the event he needed to identify the body.

All was well.

Then, I stopped in the grocery store nearby the apartment where I stay when I travel up here and was overtaken by the thought of, "The world didn't stop last year even though mine did."

I came to the apartment and noticed that there were calendars by my desk that were still on the same month as when I was here last. Right there was the proof I needed. The world DID stop! But wait, if it is still that month, then what was this thing called summer that I recall just a few months back. According to the calendar I was looking at, summer was still several months away.

Right now, I'm waiting for laundry to finish because my sheets and towels in this apartment haven't been laundered for a long while. How can that be? According to that calendar, I just washed them last week.

As I type this, I am listening to a replay of the NPR show, "Pipe Dreams." Why are there all those shows listed on there up until November 2009 ? The last one I listened to as I worked here in the apartment was in February 2009.

I wondered the other week how I would wrap up the blog once I got the "all clear." Forgive me, but there is more to tell you.

Including, how I will learn to stare out into a field that looks familiar, but has changed in appearance. The point of standing and staring in that field is to not only get back on the horse, but to find the horse.

Monday, November 16, 2009

Way Late Posting This, I Know

WARNING: Long Post Alert!!!! (Go to the third paragraph if you don't want to read a bunch of stuff)

Was scheduled to meet with the doctor today at 2:30 to review the biopsy results. Frankly, I saw it as any other appointment, i.e. another appointment in which I would learn more about all of this and how we were going to go after the rest of the cancer in there and finish it off. Another option I considered was that it would never be finished off and that there would be a regimen to keep it in control for the rest of my life. Then, there was the possibility that the doctor would call and say the biopsy results weren't back yet and she would need to postpone the appointment. I had reasoned that one out as not likely. When I was diagnosed, I had a scan on Thursday and had the results on the following Monday. Since the most recent biopsy was last Wednesday, the odds of having results today were in my favor. One thinks of all the options. I have friends that tell me I think to much.

"As for you, my fine friend, you're a victim of disorganized thinking. You are under the unfortunate delusion that simply because you run away from danger you have no courage. You're confusing courage with wisdom. Back where I come from, we have men who are called heroes. Once a year, they take their fortitude out of moth balls and parade it down the main street of the city and they have no more courage than you have..."
- L. Frank Baum

I had my day planned. I had scheduled an appointment with a client near the doctor's office at noon. Then, I would have my lunch at Padow's (a really good Richmond delicatessen) and then would go the the appointment. While in the appointment with the client, my cell phone took a voice mail. When I got out to my car, I saw that I had received a call from the doctor's office. #$^@#$%&W#$%%#$!!!!!! "The appointment is canceled," I thought. I listened to the message and the doctor told me there was no need to come into the office with what she needed to tell me and asked for me to call her back. She did say in the message that there was good news. So, I called. I spoke to her and she confirmed that the biopsy results indicated that the tissue was not cancerous and was most likely some muscle tissue still reacting to the chemotherapy treatments.

We also discussed that we would send my CT and PET scans to the MCV doctor and let him review them. His initial comments after the scans were that we still may radiate the area to kill off any hidden cancer cells to keep them from reproducing. As my scans were at a separate hospital from MCV, they loaded them to a disk (which will be mine to keep when the MCV folks are done with it and I will post images on here as soon as I get the disk back) and I took them directly to MCV at the recommendation of my doctor so that they would be reviewed promptly. MCV will not be looking to see if they spot any cancer. They will be looking to see if it is feasible to administer any radiation treatments due to the location of the glowing area in relation to other organs. We'll find out.

During all of that, I called people to let them know. If I haven't called you or e-mailed you yet, forgive me. Some of the calls take longer than others and I treasure every minute of them. We'll talk soon. Feel free to call me if you like.

Now...The Rest Of The Story.


Every one I talked to today was ecstatic. Some more of that "medicine" I need and, like I have received in the past. My response was not as ecstatic. I think I tried to fight it, but couldn't get myself past being lukewarm about it. As I thought and talked it about it, I realized it was because I have spent the past year being told I have cancer and that we were working on treating it. For there to be a day when it suddenly all may be gone, is kind of difficult to wrap your head around. There is that notion that it could come back. I planted some hibiscus seeds in an area of my yard a few years ago and they never came up. Until this year. The seed was there. It germinated in it's own time. So what's a fella, whose been told that he may be cancer free, to do?

The Rest Of The Story - Part Two

He buys paper tiaras and cheap plastic leis. That's right. I bought them over a week ago to take to the folks at the clinic to recognize my anniversary of meeting them. I meant to take them by last week but some crummy biopsy sedatives got in the way. I wrote the words "Happy Anniversary" on the tiaras and took them to the clinic today. At the same time, I was able to tell them about the outcome of the biopsy. It was a spontaneous party of sorts. It was about me, but it was also about them. They were able to look at a job well done by them. That's how tough their job is. They have to look at ME as a job well done. Bless their hearts.

From there, I went to the radiology department to pick up my scan CD and who is there but one of the technicians who did my PET scan the other week. I got to share the news with her. She also advised me that I would be able to pull the scans up on my computer and view them.

From there, to MCV to drop off the disk and maybe "just happen" to run into some of the good folks down there. I did. The folks I saw commented on how well I looked (I was wearing office attire with a tie vs. pajama bottoms and a casual shirt) and I realized it had to make them feel good about a job well done on their part.

And from there, over to the folks where my stem cells were collected. Same thing. Lots of "how great you look, etc." I told them my "I've had a great year story."

With all that, I realized that I was excited for all of the people who provided any form of medicine whether it be FDA approved medicine or the medicine of thoughts, prayers, food, rides, lawn mowing, laundry, cleaning, laughter, visits, leaf raking, and forgive me if I left anything out. But, to paraphrase the words of the great philosopher, Linus, "That's what it's all about, Charlie Brown."

There are other sweet stories from today. I will not post them here. Nothing scandalous, but I'm respecting the individuals connected to the stories. I'm happy to share them in person with you, but not here.

I've learned what I think is a secret, but it isn't so much a secret. I'll share that with you tomorrow. Here's a hint:

...'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,
'Twill be in the valley of love and delight.
When true simplicity is gain'd,
To bow and to bend we shan't be asham'd,..." - Elder Joseph Brackett

Forgive me if I made you stumble in the reading of this. The more I write, the more I have to proofread. Seriously, I spend more time proofreading and editing my blog entries than I do composing. It's the least I can do for you.

Saturday, November 14, 2009

Not Too Bad

IVIG infusion went relatively well. I started around 9:45 and finished around 2:15. There were some chills and shaking that were listed as a possible side effect. The nurse got them under control once I let them know about it. It's difficult sometimes to be a hypochondriac about some of this stuff especially when you have had similar symptoms in the past prior to being diagnosed with an alien.

However, it is important to let the doctors and nurses know when you are feeling something out of the ordinary.

Another thing I have learned is that it is very important for the patient to be well informed of the medications they are taking and the details involved. For instance, since I had a reaction to the sedatives used in Wednesday's biopsy, I took the paperwork from the hospital that listed the sedatives and the amounts that were administered on Wednesday to yesterday's appt. I informed the Nurse Practitioner of the drugs and my reaction to them and she appreciated knowing that information before the infusion started.

As far as physical reactions to all of the pharmaceuticals this past week, I feel better today than I have since Wednesday. My suspicion is that since my body has been through some pretty significant changes due to chemo, the "bounce back" factor isn't as strong (for now) as it was in the past. That's a question for the doctor on Monday when we review the biopsy results.

Next IVIG infusion is scheduled for December 10.

I got nothing to post until Monday after the appt. with the doctor. Catch you then.

Friday, November 13, 2009

Catch You Later

Will fill you in on the details of how the IVIG infusion went later on. It's an unknown to me, so there is some angst. Especially when they call you the day before and ask you to come in a half hour early to sign the release papers. However, I did that last year with chemo and also a nurse friend of mine tells me that it is a pretty standard procedure.

It being Friday the 13th has nothing to do with my angst, although my blogsite is a popular hit as Friday the 13th approaches. Earlier this year, I posted some Friday the 13th jokes and as the day approaches on the calendar, I get lots of hit from all over (mostly countries with British connections in their history, i.e. South Africa, New Zealand, Australia, England, Scotland and Canada).

Crazy.

Thursday, November 12, 2009

Would, Coulda



Biopsy - done.
Greg after the biopsy - almost done in.

Had a reaction to the sedative that was used during the biopsy. It started as a cramping feeling while I was still on the CT "bed" and then evolved into some pretty serious "wooziness" (to use a "medical" term). The cramping subsided after a little while, but the wooziness stayed with me and even at this very minute it is still there to a lesser degree than yesterday.

Anytime I was moved, including standing or sitting up, I would get lightheaded and nauseous. Fun times. I guess it's the result of the body getting kicked around by the chemotherapy. I had no problems with side effects from previous biopsies, so this caught me and the nurse by surprise. I did have the same nurses that I had with previous biopsies and they are great ladies. The lead nurse called over to post surgery later on just to check on how I was doing. I told the nurse to tell her we had started happy hour without her.

Needless to say, I was pretty out of it the rest of the day. Came home around 3:30 or so and went directly to bed, where I stayed until 7AM this morning. Yesterday was your opportunity if you wanted to inflict physical harm on me without any resistance from me. You could probably get by with it today.

Tomorrow at 9:30 AM is my first IVIG injection.

Today is the one year anniversary of my first chemo treatment.

Tuesday, November 10, 2009

Ghosts And Globulins

Today.....CT biopsy.

Maybe Friday (waiting for confirmation from the doctor's office), the latest "next event." Seems like some parts of the whole blood thing have not fully bounced back. As part of my follow up, it is required that a IgG level was required after day 100. IgG level testing is to assess the amount of immunoglobulin in my system. If it is below a certain level, then it needs to be replenished. Today, the doctor called and told me that my immunoglobulin was below the minimum level and I would require an infusion (IVIG). They will occur once monthly for the next three months. As I understand it, this is not all that unusual of an occurence for a transplant patient. The what and how follow.

Immunoglobulin - "A protein produced by plasma cells and lymphocytes and characteristic of these types of cells. Immunoglobulins play an essential role in the body's immune system. They attach to foreign substances, such as bacteria, and assist in destroying them." - http://www.medterms.com/script/main/art.asp?articlekey=12077

IVIG - "A sterile solution of concentrated antibodies extracted from healthy people that is given straight into a vein. It is used to treat disorders of the immune system, or to boost immune response to serious illness." - http://www.medterms.com/script/main/art.asp?articlekey=11530

The first IVIG infusion is tentatively scheduled to take place this Friday. I will confirm with the doctor's office this AM. It will take place in the chemo room at the clinic where I received my first 9 chemo infusions. They asked me what office location I preferred to go to for the infusion and I told them I wanted to go wherever the people who administered all of my previous chemo treatments would be. I'm not sure they'll be as thrilled to see me as I will be to see them, but Friday is the day after the one year anniversary of me receiving my first chemo treatment.

Side effects: "The majority of side effects are mild, transient, and self-limited and do not require discontinuation of therapy.The most common side effects are:
* headache
* myalgia (i.e. muscle pain)
* fever
* chills
* backache
* chest pain
* nausea and/or vomiting

Fortunately, most patients with these side effects can be helped by slowing down the rate of infusion. Premedication with acetaminophen, antihistamines, or occasionally steroids can also help decrease side effects.

Serious adverse events such as aseptic meningitis, thrombotic events, and renal dysfunction have been reported to occur in association with IVIG." - http://www.immunedisease.com/patients-and-families/ivig-therapy/ivig-side-effects.html

The infusions take about 5-6 hours per infusion, so there will be plenty of time for chemo room hi-jinks. Since my last trip to the chemo room was in May, I hope it's like riding a bicycle, i.e. once you learn how to misbehave in the chemo room, you don't forget.

After the infusions, there are no limitations on physical activity and no drop in blood counts, etc. as there was with chemo.

Just when I thought there wasn't more stuff to learn about all of this.......

No Guarantees

Before you start reading, I will warn you that today's post is a contemplative one. The purpose of this blog is to share this journey with you. I take pride in knowing that I am pretty certain I have said and done things during all of this that are pretty innovative for a cancer patient. I know for a fact I have said things to the doctors and nurses that they have never heard come from the mouth of a cancer patient. Did I tell you I was proud of that? I am.

To get to the solution, one has to look at the problem and process it. Today's post is me sharing the problem with you. I'm not asking or expecting you to present me with a solution. I just want to share the process with you. If you don't feel you are up to it, that's OK. You may want to stop reading now.

Got a call yesterday from the folks in the hospital radiology department asking if I could reschedule the biopsy until Wednesday at 8AM. Must be something about scans/tests, etc. on Tuesdays lately. My only concern was that it would delay the results appointment that is scheduled with the doctor next Monday. Called the clinic office and found out that it would not delay the doctor appointment, so all is good there. The added bonuses were that as there is no food/drink after midnight on the day of the biopsy, the wait to eat or drink something won't be as bad on Wednesday as it was going to be today when the appointment was scheduled for 11:30AM. In addition, I got to talk to one of the cool people that was in attendance at my first biopsy last year and also for the port insertion and second biopsy. Had you told me a year ago that I would have 3 biopsies for cancer in a year's time.....

Speaking of a year, it is at this chronological point in the story of the alien that the "Ghosts of Cancer" have come to visit.

Last Saturday night as I headed home from Annapolis after dark, I was visited by the ghost of October 25, 2008. That was the last time that I drove on I-95 south of Washington DC after dark. It was two days before I was diagnosed.

Sunday, I moved the shirts that I wore this summer while I was at MCV, from my bedroom closet to another closet. I enjoyed wearing those shirts and they perked me up when I wore them. I was recognized in the bone marrow transplant unit for wearing those shirts. As I moved them, I associated them with less enjoyable days.

Yesterday, I went back to church for the first time since before I was admitted to the hospital and today I went back into the office wearing a tie for the first time since July 15.

Now that it has been over a year since I started the blog, I go back to the posts from last year to read them and note what I was doing at this time last year. I read that while I was anxious about what was ahead, I was convinced that I would make quick work of the alien and he would be gone and I would be partying with old and new friends to celebrate in the spring of this year.

I have never required medical care for a condition for this length of time ever in my life. The longer this lasts, the larger the ghost population becomes.

We know the story of "A Christmas Carol" and we know that Scrooge will be visited by 4 ghosts and the resolution will come. When Scrooge met the ghost of Jacob Marley, he wasn't sure what was to come next until Marley advised him there would be 3 more ghosts after his visit.

With cancer, there is no guarantee when and if the ghosts will end.

“An idea, like a ghost, must be spoken to a little before it will explain itself.” - Charles Dickens

Monday, November 9, 2009

A Question You May Ask (The Radiologist Did)

When the doctor discussed the PET scan results with the radiologist on Friday, the radiologist commented, "Why don't you just have the glowing area removed surgically?"
The doctor replied that since it was lymphoma, there would be a danger of a cell breaking loose and circulating into the lymphatic system and creating some new havoc.

I've told people that I'm pretty confident about getting to heaven. It's the length of my stay that may be in question because I'm going to have lots of questions. The initial questions are going to be based on God's research and development on the human body. I think the research and development was pretty good work, but I wonder if the execution of the project got awarded to the lowest bidder.

Tomorrow is another "Turkey Baster Day" (i.e. alien biopsy). No food or drink after midnight. I have to arrive at the hospital at 11:30AM and the biopsy is scheduled for 1PM. After the biopsy, there is a time period where I have to remain in a "holding area" for observation. I'll have my I-Pod and sheet music to study for.....shameless plug alert...

Music In The Old Church
Grace & Holy Trinity Episcopal Church
November 21 @ 2:30 and 8:00 PM
Directed by: Jimmy Hicks

I went to my first rehearsal last night (they have been rehearsing since early October) and the music is amazing. It is a Richmond VA "Do Not Miss" event. If you think you may be interested in attending, contact me and I can fill you in on ticket information.

Today's schedule....off to work for the first time since July.

Send good thoughts and prayers today for Hunter and his family as he has a set of scans today. Waiting for the results is a tough time. Also remember my "stem cell alumni" friends, if you would.

Friday, November 6, 2009

Close




Back from the results appt. I apologize for not posting until now, but I've been on the phone and I also had to bring in my houseplants and banana trees. The news I ultimately wanted to hear was, "There are no restrictions for you right now." I did hear that news. I am free to resume all pre-diagnosis activities. I mentioned to the doctor that I would wear my mask while doing yard and garden work. She said, "I'm not so concerned about the mask as I am about you wearing gloves. Nicks and scrapes, etc. are open invitations for infections."

I asked what it was that allowed me to resume regular activities. She replied, "All of your counts are in the normal range." I told her that I never expected that she would use the word normal to describe me. She replied, "I said your COUNTS were normal." That's why I like her.

Another funny exchange between she and I occurred when I told her I could feel the alien remnants in there. I asked her if I was imagining things. She verified that I wasn't. Since the alien is no longer surrounded by fluids, in it's calcified state it is contacting other organs, etc. that have nerves and that is what I am feeling. I told her that I hadn't felt it kick yet. As a mother who experienced a pregnancy, she replied, "When it starts kicking you sharply in your upper rib cage, then you can complain."

However, more education to come. The PET scan revealed that there is still an area of activity in the alien. It is very minimal and if I did not previously have cancer in that area, there would be no need for further investigation. However, they want to err on the side of caution and check it out. There is a possibility that the glowing area is muscle tissue that is reacting to the previous chemotherapy treatments.

What that means is that I will have a biopsy on Tuesday, the 10th. After that, I will meet with my doctor on the 16th to discuss the review of the biopsy. She has brought the doctors from MCV into the discussion and they will collaborate.

If it requires further treatment, targeted radiation therapy is the option on the table. How many treatments and the intensity is unknown until the biopsy is reviewed.

The good news is that, 1) I will now gain some more knowledge about cancer and radiation treatments, 2) The side effects of radiation are nausea and fatigue (no hair loss - good thing because I got my first hair cut today since last year - didn't mow the lawn, just trimmed the edges) and my level of activity will only be determined by how I feel physically. I won't have to go back under "house arrest" when/if radiation treatment begins.

Where I am mentally with all of this can be summed up by part of the conversation I had with the doctor today. She said, "I know you didn't hear everything you wanted to hear today. " I responded, "The biggest thing I wanted to hear today is that I could resume normal activities. I got to hear that. If it last 3 weeks or 3,000 weeks, I'll enjoy those days."

"Good night friends." - Bo's Mother and my friend, Amy

Wednesday, November 4, 2009

Go Where You Want To Go





















"Barium sulfate is frequently used clinically as a radiocontrast agent for X-ray imaging and other diagnostic procedures. It is most often used in imaging of the GI tract during what is colloquially known as a 'barium meal'.

Barium sulfate is also used as a high temperature oxidizer in certain pyrotechnic formulas, as barium compounds emit a green light when burned. Barium nitrate is more common in green pyrotechnic formulas, as it contains an oxidizer while still producing green colored light." - http://en.wikipedia.org/wiki/Barium_sulfate


Had I only known...........(don't even go there, Skippy!)

Tuesday, November 3, 2009

It Rhymes With Witty



Was scheduled for the PET scan today. Didn't happen. The official word is that since I drank a barium solution yesterday for the CT scan, there may be some of it still left in my body. With it still in my body, it could obstruct and literally create a glowing image that would "overpower" the PET scan images and make them useless. There needs to be a gap of 2-3 days between drinking the barium banana smoothie and a PET scan.

Now this is the funny part and I apologize in advance for the hospital humor. The technician asked me if I had noticed that the barium was leaving my body. I told her I drank plenty of fluids yesterday, so I guess that it was leaving my body. She said, "Actually, barium leaves your body in your stool." Let me ask, "How would I know that and how would I be able to tell if there was some barium in there? Should I turn out the lights and look for phosphorescence or something?" I was reminded of one event last year when I was first admitted to the hospital and the nurse picked up "the pot on the floor" and asked, "Is your urine normally this thick?" I replied, "I normally don't do quality checks on it." Seriously.

As I didn't find out about the need to postpone the PET scan until I was sitting in the chair waiting to have blood drawn, I wasn't amused. My mood was pretty...well...it rhymes with witty. I wasn't feeling too kind to the scheduling folks at the hospital at the time, but time passed and I realized that given the details of what they do, they are entitled to make a mistake every now and then. My inconvenience wasn't life threatening and I know that if it had been, they would have responded appropriately.

From there, I went to the oncologist's office to let them know my scan was delayed (and to also deliver an "anniversary card" to the Nurse Practitioner as it was one year ago tomorrow that we met each other through a bone marrow biopsy). From there, I left the hospital and as I was walking to the car, I met one of the nurses from the clinic on her way into the office. She's also a great soul and we chatted about my morning. Let me interject here that this was another instance of where I see miracles in the world.

Within minutes of talking to her, my cell phone rang and it was the Nurse Practitioner calling to let me know that they would get things rescheduled. Within minutes of that phone call, she confirmed that the PET scan was rescheduled (Thursday at 8AM) and the results appt. with the doctor would be moved from Thursday at 11:15AM to Friday at 2PM. That rearrangement is sitting well with me as I didn't want to wait through the weekend for the results. However, I had resolved that I could, as I did my pity party default of realizing that there are people laying in hospital beds right now with more discomfort and inconvenience than I am experiencing.

Father O'Leary had saved up to buy a new shirt. He went to a tailor's shop, full of excitement. The tailor measured him and said, "Come back in a week, and--if God wills--your shirt will be ready."

The priest contained himself for a week and then went back to the shop. "There has been a delay. But--if God wills--your shirt will be ready tomorrow."The following day Father O'Leary returned. "I am sorry," said the tailor, "but it is not quite finished. Try tomorrow, and--if God wills--it will be ready."

"How long will it take," asked the exasperated Father O'Leary, "if you leave God out of it?"

Sunday, November 1, 2009

Recurring Dream

For several years in my recent history, I had a recurring dream that involved a room that I would never enter. The room was in my house (even though the house in the dream was nothing like the one in which I actually live). Sometimes, there would be obstructions in the hallway that would lead to the room and I could never get to the room. Other times, I would get to the room and be afraid to enter. The room was always dark, but I could see shapes of things in the room (boxes and furniture) through the sheer drapes that hung in the windows of the french doors leading into the room. During one of the dreams, I discovered there was another entrance to the room on the other end of the room from the french doors. In that dream, I entered the room, turned on the lights and walked up to an oriental armoire and started opening it. All I recall is that there was lots of cool stuff inside of it, but I do not recall the specific items. That was the only time I ever entered the room when I had the dream. Once I entered the room, I thought that it would put an end to the dream as I had analyzed the dream as an anxiety dream and entering the room meant that I had resolved my anxiety. I continued to have the dream after that, but never entered the room again.

I have not had the dream since last year when I was diagnosed with NHL.

"Some studies have indicated an indirect relationship between stress and certain types of virus-related tumors. Evidence from both animal and human studies suggests that chronic stress weakens a person’s immune system, which in turn may affect the incidence of virus-associated cancers, such as Kaposi sarcoma and some lymphomas (5).

More recent research with animal models (animals with a disease that is similar to or the same as a disease in humans) suggests that the body’s neuroendocrine response (release of hormones into the blood in response to stimulation of the nervous system) can directly alter important processes in cells that help protect against the formation of cancer, such as DNA repair and the regulation of cell growth (6)." - National Cancer Institute

Between now and Thursday of this week, I got nothing witty to say. Tomorrow, I will be drinking the banana smoothie for the CT scan (you've read about that adventure before - although, they did have the option of a macchiato flavor this time. No thanks. To me, hell would be a table full of lima beans and coffee for eternity.) and then Tuesday is the PET scan. I promise to post on Thursday as soon as possible after the results appt. If I think of something witty between now and then, I'll post.

See ya!

Saturday, October 31, 2009

In Sync With The Holidays





































Even as a kid, there was always "something" about Morticia Addams and Lily Munster....
From last year and moving forward:
Halloween 2008 - First full day I spent out of the hospital after being admitted
Christmas Eve - Tuxedo chemo
Good Friday - Final day of chemo recipe #2
July 4 - Neupogen injection for preparation of stem cell collection
Halloween 2009 - Day 100 post stem cell transplant

All of those pale in comparison to the "holiday" that could be November 5 @ 11:15AM.

Friday, October 30, 2009

99 Days Of Post Transplant On The Wall

"One day to a new beginning
Raise the flag of freedom high!
Every man will be a king
Every man will be a king
There's a new world for the winning
There's a new world to be won
Do you hear the people sing?" - Les Miserables

Today, a trip to the hospital to pick up the contrast solution (i.e. banana smoothie) for Monday's CT scan.

Although tomorrow is a significant day on the Greg calendar, it pales in comparison to next Thursday and therefore I will change the countdown calendar tomorrow after the Day 100 calendar hits "0."

There are plans for next Friday based on either outcome of Thursday's meeting with the doctor. Either plan calls for orneriness.....in a good way.

Thursday, October 29, 2009

The Top Ten (Plus Two) Things To Tell You About Chemotherapy


I was talking to a friend of mine yesterday who has a friend recently diagnosed with breast cancer. Her friend has had surgery and then will begin a chemo regimen. I shared with my friend some things she could share with her friend prior to beginning chemo treatments.

1) Chemo is poison. So are lima beans. The proper administration of either is ultimately good for you. I do believe that since I had 10 total cycles of 3 different kinds of chemo, I am absolved from ever eating lima beans again in my life.

2) Chemo is like cake. There are different recipes for each type and the recipe for either is specific to the individual.

3) If anything feels abnormal (i.e. nausea, pain, etc.), it's OK to tell your doctor you are feeling discomfort. I felt there were more drugs by volume to keep me from having discomfort than there were actual chemo drugs that went in me.

4) In addition to seeing the chemo room, ask (and politely insist) that you meet the chemo nurses before you begin treatment. If possible, ask if there is a former patient who could introduce you or offer insight into their experience with your treatment team.

5) Ask a friend or family member to go along with you at least for your first chemo treatment. It's an overwhelming feeling to go to that first treatment. Having someone along spreads out the angst.

6) Challenge yourself to make the chemo experience a special one for yourself and the other patients. Pay close attention to the "personality temperature" of the room before you cut loose too much. Watch how the chemo nurses interact with others to help you gauge the "temperature."

7) Take snacks, food and drinks for yourself. The process takes a little while and you will get hungry and thirsty while you are there. Plus, hydrating yourself is something they want you to do to help protect your kidneys from some of the chemo drugs as they flush out of your system.

8) Have a good idea of how long each treatment will take to allow for scheduling of your day and the day of anyone who may come to be with you during treatment. Total treatment times may vary as you go through the process.

9) If you feel like it, take snack treats for the staff and other patients. You'll be a hit. It's especially cool if your treats coincide with a holiday. St. Patrick's Day was a day I focused on during my treatments. The other day, I saw a green wig I bought for St. Patrick's Day on one of the pumpkins on display in the clinic office. I consider it a bit of my legacy there.

10) Be prepared that you will connect with other patients in the room. You will find yourself drawn into conversations. You don't have to do it and you can bury your nose in a book or take a nap if you like. That's OK. But, it's OK if you want to talk. Someone WILL talk to you; be it another patient or one of the nurses.

11) Frankly, any book or article that is older than 2-3 years and describes an individual's chemo experience, should not be referenced. I read a book by someone who was diagnosed with Stage 3 Non-Hodgkin's Lymphoma in 2000. The latest copyright on the book was 2008. The information should be pretty up to date, right? It wasn't. Specifically, his chemo administration and side effects were pretty dramatic and seemed ancient compared to the "modern" methods. I believe it's irresponsible of an author or publisher to keep a book on the shelves that is older than 2-3 years without updated information.

12) The chemo room is one of the times you will feel the safest and most cared for as you go through treatments. You will experience anxiety about side effects, etc. when you go home after your first chemo. It's normal. If you are feeling ill, you can call your doctor's office at any time. Knowing there is somebody who will respond to you immediately when you are feeling side effects, etc. while you are physically in the chemo room is a "peaceful, easy feeling."

"Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving." - W.T. Purkiser

Wednesday, October 28, 2009

Stop Me If You've Heard This One


On tap today is a visit with the Nurse Practitioner to check on blood work - regularly scheduled appointment. Pending the outcome of next week's appt. with the doctor, it could be my last visit with the Nurse Practitioner in awhile.

Speaking of the doctor, today is the one year anniversary of our first meeting. Let me tell you how that went. By the time she came to my room, I still hadn't had my biopsy yet and was still under the no eating/drinking restrictions (them medical people call them "NPO restrictions"). When she met with me, she told me that she was pretty sure I wouldn't be having my biopsy that day due to the lateness of the day. I looked at her and asked, "Does this mean I can have something to eat or drink?" She assured me that I could have food and drink up until midnight and then the NPO restrictions would kick in again for the next day.

She was standing there with her hands on the railing of my hospital bed as she spoke to me. I was so grateful that I could have something to eat that I reached up and stroked her hand. She immediately pulled her hand back and said, "I'll go see if I can get something brought in for you."

I apologized to her the next day. I think we've gotten along fine since. She's a good egg. I am giving her an "anniversary card" today and one thing I thanked her for in the card is her acceptance of what I call humor. She has a pretty good sense of humor herself.

"It's the Great Pumpkin, Charlie Brown" was on last night. It was fun to watch it as an adult and appreciate some of it's best quotes.

Linus: Never jump into a pile of leaves with a wet sucker.
******************************************************************
Charlie Brown: Oh brother. When are you going to stop believing in something that isn't true?
Linus: When YOU stop believing in that fat guy in a red suit and the white beard who goes, "Ho, ho, ho!"
Charlie Brown: We are obviously separated by denominational differences.

Tuesday, October 27, 2009

Anniversary?!?!?!

It was a year ago today that 3 good people with whom I work urged me to leave the office mid-afternoon and go to the emergency room of the hospital located nearby the office. My hesitation was due to having called my primary care physician earlier and telling him that my symptoms from the week before were still uncomfortable and that maybe I needed to see a GI specialist. He scheduled me for a CT scan 2 days out and said that we would proceed based on that scan. In addition, I seriously did believe that I was feeling better, but was sick and tired of feeling sick and tired. Finally, I had concern knowing that I if I stepped into the emergency room, I would be facing a significant co-pay on my insurance that I would have rather spent on more "high priority" items on my list.

Had you told me a year ago that a year later, I would still be under the care of a doctor for whatever was ailing me at the time, I would have told you to stay out of the medical profession as a career. When I wrap my head around the fact that it is now a year later, that's when my empathy grows for others who have fought their own fights for several years. Wow, I can't imagine.

I will share you a story of how I misbehaved the next morning after I was admitted the night before. I was in a semi-private room and the gentleman in the other bed was nice enough, but he wanted to talk ALL NIGHT LONG and also wanted to complain about how hot the room was. Needless to say, there wasn't much sleep that night. I wasn't feeling too benevolent to him by the next morning. I was on a no food or drink restriction due to my pending biopsy. Even though I hadn't wanted to eat much the week or two prior to being admitted, I had been stabilized by the staff to the point that when they brought him his breakfast, the smell of his breakfast let me know my appetite had returned. He began "taunting" me about what was on the menu and how good it was.

Later on in the morning, a friend of mine came to visit. Since it was a semi-private room, we drew the curtain between my bed and the other gentleman so we could have some privacy as we talked. He and I also shared a TV and we each had our own TV remote control. As my friend and I talked, he was watching TV, but would randomly interject comments into our conversation. As he did so, my friend and I would look at each other and shrug our shoulders. However, his interjections became a little too intrusive. At this point, I will explain that the TV remotes were of the such that if you changed the channel forward, you couldn't get back to the channel you were previously watching unless you cycled through the entire channel line up. After an interjection that finally plucked my last nerve, I used my control to change the channel on him. I heard him comment that the TV must be acting up and I watched the TV as he cycled back to the channel he was watching. I turned it into a Pavlovian type of experiment, i.e. each interjection yielded a channel change. Needless to say, I redirected his attention.

It's only the doctors and nurses that have to abide by, "Primum Non Nocere."