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 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 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).


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." -

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." -

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." -

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 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


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." -

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 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!