Thursday, April 30, 2009

No Pressure At All

A former co-worker, Will, was the first person I knew that closely affected me when he was diagnosed with cancer. Even though it was almost 30 years ago, I remember it well. I confess, I can't remember what form of cancer he had. When he came back to work, I didn't know what to do or say. All I did was pick back up on the good natured kidding that we had been doing before he got sick. I felt pretty inadequate. I wish I had known then that maybe I was pretty close to doing the right thing. I remember going to visit him in the hospital when he had a recurrence. When I walked into the room, he was in pretty bad shape. I had no idea what to do or say. We had a nickname for each other and when I walked in, he grinned as best he could and called me by that nickname.We had a great conversation after that. I remember his funeral as a celebration of his life. It was appropriate. Will cherished his living days.

Cancer gives you permission to cherish your living days without needing someone else's permission. I gave myself an hour and a half of good mental time yesterday before I went to chemo. It was an activity I have done before, but have never enjoyed it as much as I did yesterday. Medical note: I go in this morning for my 30+ hour chemo treatment (armed with Peep Colored Puke Prevention Pills - if I can get my doctor to refer to them with that lingo, I know I will be in her head. She used the term "alien" the other day. I was so proud of her.), so there won't be a post tomorrow until tomorrow evening (unless by some miracle I find a Wi-Fi connection I can tap into this time).

As a person who cares about a friend or family member with cancer, all you have to do is help them cherish their days. There are no rules about what is appropriate. You are allowed to make mistakes too. For me, I had to learn in the early going that there were things I needed to accept for the gift of compassion they were. I didn't suddenly become an expert on cancer when I was diagnosed with it. I'm not one yet - nor will I ever be. I'm too lazy to put that pressure on myself. Nor should you. But there are a "Holy Host of Others Standing Round Me" (and You) to help us all. It's pretty cool. I added some more to my list last night when some of my NC friends became Facebook friends. It's awesome and pretty humbling that those fine folks want to be my Facebook friend. Them's some of the "angels" I've talked about in the past. And what's really cool is that they are becoming friends with some of my long time friends/angels here in Richmond. When that happens, it makes my day "the best day ever!" (I'm starting to get that expression down, Bo!).

I have some other friends that the mother/wife in their family is struggling with kidney, diabetes and loss of sight issues. They are great people and can use your good thoughts and prayers. Remember Karl,Dee Dee, the children and the seeing eye dog.

My friend Pat in Maryland has a friend that was recently diagnosed with stage 4 Colon Cancer. She's concerned for him.

This growing list of people of whom I am being made aware makes me recognize there are people out there who I don't know that are facing their own challenges. We don't know them by name, but let's keep them in mind anyway. I've learned through this "fun" that the world can get smaller by the use of the internet. We may meet those folks someday. How cool would that be?

Wish them their "good times ahead" days that they deserve.

Wednesday, April 29, 2009

Please Calm Down, Brian Williams...

I'm singling out the NBC Nightly "News" "Newsman" for his script last night. He led the broadcast with "There is no inoculation for swine flu." We know this. However, there are treatments, but that's not exciting enough. I promise that I watch very little TV news and every time I take a peek, it's like an inoculation for me.

As my immunities are compromised during chemo and will be wiped out when I get the "sucker punch" chemo, I'm pretty sensitive to swine flu news. The news does make me be more cautious about interaction with those who may be ill. It makes me be more thorough when I wash my hands. It also makes me use reusable grocery bags rather than hand baskets or grocery carts that are carrying who knows what on their handles. I'm also more diligent about carrying my hand sanitizer with me.

However, there is some mind over matter in all of this. The doctors and nurses are all about getting my head in the game with my "fun." It's very important to have a good attitude through all of this. I believe the mass media is creating a world of stress. One can make themselves sick worrying about getting sick. I've been sick before due to stress I've imposed upon myself. When I finally felt better, I realized how stupid I was to do that to myself.

I challenge you to turn off the news and do something for yourself or someone else during that time. We get upset if someone calls during the dinner hour, but we give permission for news organizations to invade our minds during the same time frame. We complain that no one gives good news during the newscasts. Why don't you be some one's good news during that time? I'll take your call.

I wonder if Brian Williams will pay my co-pays when I have to visit a counselor. I'm also close to not caring about the horse he came in on.

Off to Camp Chemo today for Day Camp. We'll have fun in there. Always do!

Next up....Good Days!

Tuesday, April 28, 2009

"With A Holy Host Of Others..."

....standing round me
Still I'm on the dark side of the moon.
And it seems like it goes on like this forever
You must forgive me
If I'm up and gone to Carolina in my mind." - James Taylor

Let me just tell you, my friend Amy mentions me on Bo's journal and my blog site lights up with hits from North Carolina yesterday. Thank you Tar Heel State friends for taking a look. I have one message for you....SEND BARBECUE!!! You know, the good kind...from your part of the state. Kidding..because I know I don't have enough freezer space to accommodate what you would send. However, if you are ever in Wallace NC, send Billy Goff my best (he's on the corner of Highway 41 and Highway 11, just a short skip off I-40). He doesn't know me from Adam, but I know who he is and I hope to see him sometime before year end.

News from Hunter's mother is that his scans came back clean yesterday. Good news for them. He has some treatments still ahead, but things are looking good for him.

Saw my doctor yesterday and counts are good. My platelets jumped from 34 on Friday to 110 yesterday. 100 clears the runway for the next round of Camp Chemo. I will be in Chemo Day Camp on Wednesday. I'll come home that evening and then go to the hospital on Thursday for overnight camp and be released on Friday. Even better news is that no one has to drive me and pick me up from overnight camp since the last experience was tolerated well.

I asked the doctor a "big boy" question yesterday. I asked her,"Is what's ahead of me to buy me time, or to buy me life?" Without hesitation, she said, "To buy you life. We are working on curing you now." I told her I knew that answer, but that I needed to hear it from her. She said it was a good question.

I also talked to her about last week being an anxiety week. She said, "Feel free to have anxiety about any of this whenever you want. We are here to help you with that and feel free to let us know whenever you need anything from us." She even cracked a joke at my expense early in the appt. yesterday. I can't remember what it was, but it was good and I gave her credit for it. She's cool.

Good times ahead!

Monday, April 27, 2009

Hunter's Day

Today, Hunter will have some scans to see how he is progressing. Since there is the waiting to be scanned and then the wait for the scan results, I'm sure his family is anxious.

Remember them today in your thoughts and prayers. They are good people who I have never met. His mother sent me an e-mail yesterday asking how I was doing. Ain't that something. What does that tell you about them?

Bo played in the sprinkler out in the yard yesterday. It's probably best we all don't live near each other. I think we would be in trouble all of the time.

The best days are ahead of us.

Sunday, April 26, 2009

Pastor Bo

I was thinking about Bo yesterday when I was working in the yard. Yes Bo, I have to wear sunscreen too! I bought SPF 50 and made sure I was in the house for the day by noon.

From his journal, I can tell that Bo doesn't hesitate to tell his cancer story to anyone. He has even shared with his classmates in school. I admire his courage to show off his "port bump." I still don't look at mine. It's a "tick" that I have about it. I only touch it by accident and not on purpose.

I've never met Bo. I've only met his mother Amy. She's an awesome person (on top of the fact that she makes excellent cookies!). Bo is fortunate to have two parents that care about him. His father and mother interact with the public face to face on a daily basis. Their communication skills have been handed down to their son. That's one of the "grace points" of Bo's cancer. He's talking about it to others. He has developed a ministry from his cancer and I am getting a kick out of watching his ministry grow. I can't wait to see what kind of person he is 20-30 years from now. I think he may be a person that alot of people will know.

Cancer is a big deal, but the conversations about it that take place in hushed tones, trouble me. Some folks with cancer prefer not to talk much to others about it. I understand. It's a personal decision and those decisions vary for each individual. I'm at a point where I realize it's a large part of the conversations I have and as I mentioned in a previous post, I wonder how interesting I'd be without it as a conversation topic. However, when I do talk about it, my goal is to leave the other individual with the impression that my goal is to beat it and "skew the statistics." I think the more others know about it, the less awkward they feel about it and it also helps them know how to deliver their ministry to cancer patients.

Medical detail: The 2nd round of hair loss started today. Had I noticed it earlier, I would have gone to my barber. Oh well, the chemo nurses said I look good bald. They're cool.

Thanks Bo! The best days are ahead!

Saturday, April 25, 2009

Thanks Skippy

Nice comment on yesterday's blog posting. Thank you. I call that good medicine.

Had bloodwork yesterday and a visit with the Nurse Practitioner. The white counts are up. Platelets are up to 37 from 13 on Monday. They need to be at 100 to have the next chemo treatment. FYI: Normal platelet counts need to be between 140 and 415. There is no sign of fatigue or anything if platelets are down. Abnormal platelet counts are primarily detected through bloodwork.

There will be bloodwork on Monday when I meet with the doctor. They will also do bloodwork on Wednesday before chemo. The Nurse Practitioner said that the Neulasta treatment didn't work well with this latest chemo. So, I'll discuss with the doctor what plan B will be for next time. The Nurse Practitioner also said that I shouldn't be concerned about the platelets coming up. She felt very confident that they will come back up.

If they aren't up by Wednesday, they'll reschedule for the following week - adding another week to the process. Today, that doesn't bother me anymore. We will cure no NHL before it's time. Seriously, rushing through this just to get it over, serves no purpose. All of that anxiety has been packed in a box and put in my mental attic. I'll pull it out of the attic if I need it. Otherwise, it may come up missing some day.

I did ask the Nurse Practitioner today if I could give her name as a contact for anyone facing cancer and needing some direction. She said it would be OK. Feel free to contact me if you ever need that resource. She's a dedicated professional with a good soul. It took awhile, but I have her (and a few of the others in the clinic) calling me by my first name. MR. Frazee is my dad.

I did get some amazing cookies today from Bo's mom. I got some Key Lime cookies and some chocolate chip cookies. We have never discussed my affection for chocolate chip cookies, so how DID she know to send them? Simple. Bo told her, "EVERYBODY likes chocolate chip cookies."

Bo got to go to PE class on Thursday and loved it. He had to skip his treatment on Friday due to a complication - so he was happy about it. They also got some good news about his summer activities. If you haven't visited his journal, it is: . You may need to copy and paste this link into your browser if the direct link doesn't work.

My friend Jay is hanging in there and actually felt energetic enough to walk several blocks to his local Ben & Jerry's the other day. His attitude is good. He still has a tough road to travel.

I don't have any more updates on Hunter.

The best days are in front of us.

Thursday, April 23, 2009

How Witty Can One Be About Stem Cell Transplantation?

Details from the meeting yesterday....First thing, From the Receptionist to the Doctor and RN, all were great people. My friend that went with me remarked on how much she liked everyone she met. I was there almost 4 hours. Lots of waiting, but if that means patients that are currently there and need attention take top priority, I'm all for it.

I'll summarize here, and if you want more details or have questions, post a comment and let me know how to contact you, or shoot me an e-mail and I'll get back to you.

It's not going to be a walk in the park, but I knew that going in. It will involve some shots that are intended to boost my stem cell production, followed by the harvesting of the stem cells. The good news about the stem cell harvest is that it will not involve extraction of them via a big ole needle being stuck into my bones. It will be via the apheresis process where they extract them through a port that is put into a vein. Much less intrusive and much less painful.

Once that is done, I will be given a 5 day regimen of high-dose chemotherapy that the doctor explained is 3-4 times the dosage of the chemotherapy I have received to date. It will most likely yield all of the fun side effects (nausea, diarrhea, mouth sores, etc.) that I have not had to date. Previous chemos have affected my blood counts and lowered my immune system. However, they are of a dosage that my immune system recovers on it's own with help from the Neulasta supplement. This high dose chemo will wipe out my immune system entirely. After the high dose chemo, they give my body a day to rest (What to do on my day off? I'll ask them if I can go to the beach, maybe.). After the day off, they begin the process of putting the stem cells back into me to get my body to start bringing back the immune system. That process requires an additional 10-14 days in the hospital. Barring any complications, I would then be released to go home and would be on limited human contact. I would be allowed to have visitors at my home. In fact, I will welcome it! I would be able to go to the store and work as able, but large group gatherings - even church, would not be permitted.

For two to three weeks after I am released, it would be required that I have someone with me 24 hours a day to help me as needed. For example, if I needed to go to the ER, I would most likely not be able to get there on my own. I won't be allowed to touch fresh fruit and vegetables due to the bacteria and viruses that are on them, but I will be allowed to eat them after they are thoroughly washed. If you think you would like to be part of the team of counselors at "Camp Frazee," -if only for a couple of hours, let me know. I will get a point person to organize it, but haven't yet. This all would happen sometime in late June or July. It all depends on what happens with the chemo requirements and scan results between now and then.

As far as the hospital thing, I will be allowed to have visitors and I won't be in a glass enclosed room or anything like that. Visitors will have to be free of any illness or viruses. There will be internet access for me, so I will be able to blog, e-mails and even get some work done (in between "yack" breaks). In addition, flowers and fruit will not be permitted in my room. Here's an idea, if you want to do something like that, rather than spending money on flowers, make a donation to a charity or organization you feel strongly about.

There are more details and I am happy to share them. Let me know of any questions you have.

All of this only makes the Big Backyard Party even more of a Bigger Backyard Party. Fun times!

Then, I Remembered......

...Uncle Ray, who died last September from his long bout with cancer. At the funeral, I asked my cousins, "Did your Dad ever have a bad day? I always remember him smiling." They said that except for his last days, he was always pretty upbeat.

I thought about him yesterday, as I thought about myself, and realized I owed it to him to hold my head up. His cancer was a lot more difficult than mine is as he had to deal with physical pain in addition to the "weight of waiting." He was a "Go Good Guy."

Get to meet the MCV folks today. I'll have that story for you tomorrow.

Superhero Bo has gone back to school and is loving it. Apparently the chicks are digging his new hair style. God only made so many perfect heads. He put hair on the rest.

Hunter is starting to lose his hair and is scheduled for a scan on Monday. From reading my blog, you know what is going through the mind of his parents right now.

Keep those mental cards and letters going for those two little guys .

Wednesday, April 22, 2009

I Shot The Sheriff

"Sheriff John Brown always hated me;
For what I don't know.
Every time that I plant a seed
He said, kill it before it grows.
He said, kill it before it grows."

And that is what this cancer thing can do to you. Some days it takes away your momentum of a positive outlook. It's something you have to deal with. The good words, cards, thoughts and prayers of others contribute to the return of upbeat days. Don't worry, I'm not sitting at home and staring out the window during these days. I'm keeping myself busy and hopefully productive. A large part of the "lack of shine in the eyes" these days is the anxiety of the "meet and greet" meeting tomorrow. Also, there is concern that if my platelet count is still low when I meet with the doctor on Monday, the chemo treatment scheduled for next week would be delayed. That would cause me to need another "mouth washed out with soap" treatment.

"Freedom came my way one day
And I started out of town.
All of a sudden I see Sheriff John Brown
Aiming to shoot me down.
So I shot, I shot him down."

Yesterday, "I shot the sheriff" by stopping by the blood center where I used to donate platelets and thanked them for the platelets I received on Monday night. Next week, I'll shoot him again by taking a Papa John's gift card to the nurse who shared her pizza with me the other night.

"I shot the sheriff, but I swear it was in self-defense."
(Lyrics from "I Shot The Sheriff" by Bob Marley)

Tuesday, April 21, 2009

The Weight Of Waiting

There, I put it in print. Was letting the remaining time left for my treatments get inside my head a little bit yesterday. Wasn't necessarily "Mr. Cheer" when I went to my checkup with the Nurse Practitioner. Let me tell you, they are good at picking up on that kind of stuff not soon after you walk in and start talking to them. They are good!

To add to the fun, my white cell counts were still low - as low as chemo has made them since day 1. However, the real "fun" began when I set a new personal best (if I was playing golf) for my platelet counts. The target range for platelets is between 140 and 415. When I was donating platelets, my count was 215 and that would be enough to allow them to take a double portion. When I was first diagnosed, my platelet counts were in the 130-140 range. Not long after I started chemo, my platelet count was 37. Yesterday, I was at 13. Although it's a sign that the new chemo recipe is working, that low of a count warranted a platelet infusion. It also reminded me that I promised to get on the nerves of The American Red Cross to make it easy for people to know how to donate platelets. Their web site is not user friendly to people who want to donate.

My plans to be back in the office by 2:30 were changed immediately and my revised schedule turned into being home by midnight. I was sent to the hospital to be checked in as an "observation patient" while they infused platelets into me. After being a platelet donor for over 8 years, it was odd to see platelets being put into me. I guess it was better to get platelets put into me after swearing than having my mouth washed out with soap (I kept my swearing on the inside, rather than swearing at the nurses - it wasn't their fault). It went well and I was home by 8:30. I'm allowed to resume all activities. I do need to avoid working with power tools, and I won't be doing my machete juggling act for awhile.

Here's a cool story: The menu for last night's dinner at the hospital was fried fish. Although their food is usually pretty good, I'm not a fan of fried fresh water fish. The nurse asked me if I wanted dinner and I passed on it. She had ordered pizza for the other nurses because they were having a busy day and no one had time to stop to eat. She gave me two slices of their pizza. Nice lady!

From Judith who follows this blog: "Today, please remember my friend Diana who passed away peacefully at home this morning in Chapel Hill after a 12 year battle with breast cancer." Godspeed Diana. Thank you for your courage and for "Going Good."

Monday, April 20, 2009

It's Two For One Day

Really don't have much to say this morning except I'm really getting a kick out of seeing how "Super Bo" has wrapped his head around his cancer and his treatments. He's a cool little dude that I look forward to getting to meet when both he and I get our "Golden Tickets!"

I do have an appt. with the Nurse Practitioner today at 1PM. I'm certain there will be blood work and review. I'm also going to pick her brain for questions to ask the MCV folks when I meet with them on Thursday. To be honest, I'm not real sure what is involved in the Thursday meeting (i.e. whether it is a simple "meet and greet" or if there will be some exams). It's good to know going in what to expect. Either way, it will be fine.

In the spirit of "Two For One," I will post information from today's appt. at some point later on today.

"The true voyage of discovery lies not in seeking new landscapes, but in having new eyes." -Marcel Proust

Sunday, April 19, 2009

The Stress of Open Minds

Found an interesting term in The Washington Post's "On Faith Column" by David Saperstein. The term comes from the Judaic tradition. It is: "pikuach nefesh," "saving a soul". To understand the term involves one to open their mind. Bringing in air to a previously closed mind introduces stress. I've intentionally left out any further explanation or details from the article. This blog is not a political or theological mouthpiece (although, if you get under my skin....see the picture from the other day about "Cancer Starting The Fight). When the mind is open, stress flushes out.

I had a piece of Key Lime pie yesterday. I never have any stress when I am eating a piece of Key Lime pie.

A saying that I remember from the mountains where is grew up states, "A wise man changes his mind. A fool never does."

Another way I deal with stress is that I never iron the back of my dress shirt when I know I will be wearing a suit jacket or sport coat. What's the point? Sometimes, I don't even iron the sleeves-only the cuffs.

Here's to stress-less days!

Saturday, April 18, 2009

Cool Things I've Experienced

In no particular order.
Saw The Fixx and The Moody Blues in concert
Won a free pass to Kings Dominion including a concert with America and Christopher Cross
Saw Peter Frampton in concert
Met Shimon Peres
Briefly met Benazir Bhutto
Met amazing medical professionals during this NHL thing
Went to three professional hockey games in the span of 48 hours (all involving a player with the last name of Lemieux)
Performed a leading role in a musical comedy front of 3000 people
Sang an operatic aria in front of a large audience at The Landmark Theatre in Richmond
Met and got the autograph of Col. Harland Sanders
Had lunch with the 1977 Miss Maryland (while she was the reigning Miss Maryland)
Got a B in my first semester college English class
Rode cross country for 3 weeks with my uncle when I was 16
Learned to really like Reuben sandwiches (which really aren't all that good for you, I guess)
Saw Lyle Lovett in concert
Saw BeauSoleil in concert (and got them to autograph an album)
Saw The Gipsy Kings in concert - several times
Saw the "Down From The Mountain" concert
Watched someone I know on the big screen in a movie with Matt Damon, Brendan Fraser, Chris O'Donnell and Ben Affleck

The good best days are ahead of me!

Friday, April 17, 2009

The Bo and Mr. Jerry Show

From Bo's mother's Caring Bridge journal entries, comes the following: "Bo just made up a little chemo countdown song while he was brushing his teeth tonight. It was so cute! Sing along if you'd like: "8,7,6,5,4,3,2,1 and then my port comes out and the cancer will all be goooone, the cancer will all be gooooone." He was also doing a little booty shaking dance with it. It's a must see! Chemo is a short one tomorrow. We should only be there for a couple of hours at most. Remember our new friend "Mr. Jerry" in your prayers this week. Friday is scan day for him! We are looking forward to rejoicing over good news with them!"

Yesterday was Day 3 of no "4P" medication. I was so tickled, I mowed the yard last night and finally put in the trash the last of the pine branches that fell back in early March during the snow storm. While doing that I was listening to a Mary Chapin Carpenter album. The following lyrics seemed appropriate for today's Bo and Mr. Jerry Show.

"Well I strolled down to the corner, gave my numbers to the clerk
The pot's eleven million so I called in sick to work
I bought a pack of Camels, a burrito and a Barq's
Crossed against the light, made a beeline for the park
The sky began to thunder, wind began to moan
I heard a voice above me saying, "girl, you better get back home"
But I feel lucky, oh oh oh, I feel lucky, yeah
No tropical depression gonna steal my sun away
Mmmmm, I feel lucky today"

Thursday, April 16, 2009

Wait! What Was That?

Learning how to focus is part of the fun of all of this. There is that distraction of what is going on inside the body, coupled with any other mundane external task on which it is my desire to focus, supplemented by the chemicals in my body, that yield interesting outcomes. Thank God for inherent animal instincts and reactions to them that are not negotiable or capable of being overlooked. Can I get a "Y'eww-uck!?" I was only talking about the wiping away of eye crust. Don't know where you went.

But cereal thusly folks, even though I know I am undiagnosed ADHD,(I find irony in going to Camp Chemo for the cure of NHL during the Stanley Cup playoffs) please p'scuse me if I do seem to go someplace else while we are talking. I'll let you know if there are any good hallucinations that I'm willing to share. If they involve Scarlett Johannson, I'm not willing to share them. Even after I hear "You're cured," there will always be times that I go somewhere while one wonders about return visits from the alien.

The good news is....That's what the regular follow up visits/scans are for. And now that I know the symptoms and what they mean, it's going to have to be a pretty sneaky alien to do this to me again.

Got my "Advance Pack" from the MCV folks. They did a nice touch with a Google Map of how to get from my house to them. Very nice. I know several people that work there and I feel like I will get the best of attention while there. I'm starting on my list of questions for them (Will I be able to bring my teddy bears and voodoo doll with me?). If you have any questions that you would like me to ask for your benefit (and for mine) - SAT test questions excluded - send them along.

Yesterday was the first day without having to take the "4P" medicine - Peepcolored Puke Prevention Pill - since last Friday. Going for day two today.

Excellent! I'm just sayin.

Wednesday, April 15, 2009


While writing today's blog, I'm listening to Van Halen's "5150" album. Good stuff from 1986.
"World turns black and white
Pictures in an empty room
Your love starts fallin down
Better change your tune
Reach for the golden ring
Reach for the sky
Baby just spread your wings
Well get higher and higher straight up well climb
Well get higher and higher leave it all behind
Run, run, run, away
Like a train runnin off the track
The truth gets left behind
And falls between the cracks
Standing on broken dreams
But never losing sight
Spread your wings
So baby dry your eyes, save all the tears youve cried
Ohh thats what dreams are made of
Oh baby we belong in a world that must be strong
Ohh thats what dreams are made of" - "Dreams" by Van Halen

Had an e-mail exchange with Bo's mother yesterday. I guess between her and Hunter's mom, we have our own support group going on (you are going to meet so many cool people at The Big Backyard No Aliens Invited Party). I'm staying in touch with them for the sole purpose of having an excuse to go eat some Eastern Carolina barbecue when I go visit them. KIDDING! - see yesterday's ACS web link.

What I've learned is, it's OK to not know what to say to a cancer patient. A smile, a card, even "How are you doing," is fine (even though I said that was taboo when I first started my blog). I've learned stuff since then. In tribute to The Ten Commandments, here are some "shalt nots." Thou shalt not promiseth the cancer patient that they will come out of it cancer free. Thou shalt not offereth alternative medical advice. Thou shalt not tiptoe around us whilst afraid that thou may sayest or doest the wrong thing.

Don't take those the wrong way; i.e. don't feel like I am trying to bring you down. I'm trying to help you from coming to the world of "I Wish I Had or Hadn't Said That", which is where I reside most of the time. The more we get stuff out in the open, the less stress we have about it in the future. My dream is once the stress of cancer is put aside, then more time will be spent on a cure.

Another friend in North Carolina is a breast cancer survivor and she told me that when she was undergoing treatment, she would get a little uncomfortable when people wanted to talk about her cancer. She often wished they would have asked about her garden and other stuff. The answer to all this is simple. None of us know what we're doing in all this. It's OK that we don't. There are answers I don't have. There are answers you don't have. I blame the chemo medicines. Funny story: The Nurse Practitioner asked me yesterday if I had any hallucinations from the new drugs. I told her I hadn't, but was kind of hoping I would. You can guess her reaction (it involved the shaking of her head).

My friend Sandy knows exactly how and when to react a specific way with me (She thinks it's the wisdom of her Southern upbringing. I think it's the fact she's been exposed to the right amount of Yankee courtesy. C'mon, she's never eaten a ramp...). She knows that gallows humor is hysterical to me at the right time. She knows when I need to process stuff. She doesn't pour on saccharine for the sake of it. Of course, she'll tell me when I need to look at an alternate view. I fear that she knows when I am sleeping and knows when I'm awake. I chose two people up front to have that role. They welcomed the opportunity to be in that position.

The purpose of my blog is to keep you updated on me. Another purpose is to help you walk through it with me and for you to be able to help others now and in the future. I don't mind talking about my cancer. Without it, I don't know how interesting of a person I would be. As I told a friend the other week, "I don't want to be a preacher. I want to be a minister."

Tuesday, April 14, 2009

Certain of Uncertainity

Here's some updates Bo, Hunter and Jay:

Bo continues to get along well. He's not crazy about it when he goes in for treatments, but the rest of the time, I sense he lives pretty joyful and is making people smile. He gets tired pretty easy, but he doesn't let that stop him from immersing himself into fun. Apparently, he loves his new slick, bald look. What a guy!

Bo's mother, Amy is staying in touch with Hunter's mother in Manteo, NC (same age, same cancer as Bo). Hunter had chemo yesterday. Amy passes on,"Other than some nausea, he's doing well. His hair is starting to come out now. If he's anything like Bo, the hair loss will be tougher on his parents than him." I can't imagine what it's like to be a little kid and deal with it, let alone being a parent and feeling helpless sometimes. However, I know my friends Amy, Rob, Hunter's mother and father are being amazing parents right now.

From Jay, as of April 11 he is home now and he is so happy to be home. Stairs are difficult (but can be done when necessary).It will be about 2 weeks before he's fully mobile. His doctor was very pleased with how the surgery went and said that Dr Weiss can begin radiation to the thigh as and when she is ready.

And that's where it all is. You enjoy the good days, have anxiety sometimes about some pending stuff, process it and choose how you want to move on. I think the anxiety stuff is normal and is part of it. Without questioning in all things of our life, we can not allow ourselves to grow. I'm a bit anxious about the 3 week "Chemo Camp," but I know that I will get answers about that next Thursday. Anxiety doesn't mean I'm in a state of deep depression, it just means I'm thinking about it and I guess that comes with the territory. But, as I have said in the past, for every anxiety or pity party moment, there have been at least three "angel visits" afterwards. My goal is to be some of those "visits" for others.

Found this interesting:

Monday, April 13, 2009

Peep Colored Pills

For nausea, I am taking Prochlorperazine. The pill is the same color as a yellow peep. I'm using for nausea symptoms only - and it works! It is used for other things, but that's not what I'm using it for, so sorry, you'll have to find something else to dog me about. It's not like I don't hand the material straight to you.

Yesterday, I did eat some Peeps (not as many as you think) and also got to go to Easter Service at my church. An amazing service it was. There was some serious pipe organ playing, including the use of the zimbelstern (If you don't know what that is, it involves the use of venomous snakes and the eating of ramps during a part of the service - KIDDING!). "Google " it.

Back to the clinic today for a Neulasta shot..part of the regular routine and then I think this week is appointment free. Couple of appts. next week, then the following week (April 29,30,May 1) is back to "Camp Chemo."

"Shes sweet on Wagner,
I think she's hot for Beethoven,
She loves the way Puccini lays down a tune,
And Verdi always creeping from her room

Well we were reelin and a rockin all through the night,
Yea we were rockin at the opera house until the break of light,
And the orchestra were playin all Chuck Berrys greatest tunes.
And the singers in the chorus all got off on singing blues,
And as the night grew older everybody was as one,
The people on the streets came runnin in to join in song
Just to hear the opera singer singin rock & roll so pure,
I thought I saw the mayor there but I wasnt really sure,
But its alright." - "Rockaria" - Electric Light Orchestra

Sunday, April 12, 2009

Can't Wait

Although this was a cartoon that appeared on Easter Sunday in 1993, I also look at it as somewhat of an illustration of the "Cancer Road." I'm looking forward to "Yess Day!" There will be trouble and orneriness on that day. Don't try to stop me.

Oh, to all my Appalachian relatives and friends who understand, appreciate and are in awe of the following....the ramps are back up this year!!!!

Saturday, April 11, 2009

No Muss (well, a little), No Fuss

Was released from the hospital at 3PM yesterday. Overall, not too bad of an experience. All of the staff was very pleasant and kind. The night nurse didn't even turn on the lights in the room when she came in to check on me at 12:30AM. Then she apologized that she woke me up when I stirred and said "hello" to her. Told her I would see her at 4AM for the "blood letting." She said, "Oh no, I let my patients sleep a little later. I'll be back at 5." She didn't come back until 5:20 and I was already awake anyway. The best part about the blood letting is that they access my port for that, so there is no foul rubber smelling tourniquet accompanied by a needle in your arm. Modern medicine be praised!

Side effects not too bad. Had some mild nausea incidents from about 5AM through noon, but took the drug they gave me that is intended to treat nausea and it worked. Today, feeling pretty good. Going to run a couple of errands, but nothing too over taxing.

The doctor did say to avoid large crowds and if I wanted to go to Easter Sunday service, that I could go as long as I went to an early one where there wouldn't be a lot of people. I didn't ask what the restrictions were on Peeps or jellybeans. Guess I forgot.

I have a meeting with the MCV folks on April 23rd to discuss the process that will occur when I go there for the portion of the treatment they will be administering. I'm thinking that will be the most interesting discussion of this whole process.

"One thing, I have learned through these years,
Is that no man, should be stricken with fear.
It should be that he walks with no care in the world.
So my friends, who are gathered today,
Hear this clear, for I'll not further say.
That no man, shall cause me to take up arms again." - "Boy Blue"/Electric Light Orchestra

Friday, April 10, 2009

It's Not Tuesday, But It Still Works

"Tuesday afternoon.
I'm just beginning to see,
Now I'm on my way.
It doesn't matter to me,
Chasing the clouds away.
Something calls to me.
The trees are drawing me near,
I've got to find out why.
Those gentle voices I hear
Explain it all with a sigh.
I'm looking at myself, reflections of my mind.
It's just the kind of day to leave myself behind.
So gently swaying through the fairy-land of love,
If you could just come with me and see the beauty of
Tuesday afternoon.
Tuesday afternoon.
Tuesday afternoon.
I'm just beginning to see,
Now I'm on my way.
It doesn't matter to me,
Chasing the clouds away.
Something calls to me.
The trees are drawing me near,
I've got to find out why.
Those gentle voices I hear
Explain it all with a sigh." - Moody Blues (gave one of the best concerts I ever saw)

P.S. No "status post" today. Hospital doesn't have an internet connection. Will fill you in on stuff when I'm released - maybe tomorrow. To my Christian Family, although Good Friday is a solemn day, remember that the joy of your faith is rooted in the rolled away stone.

Thursday, April 9, 2009

Chops Were Busted (but in a kind way)

In the picture, there is a teddy bear that is a gift from my Nurse Practitioner. Giving me the bear is what she wanted to bust my chops about(i.e. knowing that she was responsible for making a grown man take a teddy bear to the hospital). She took special care to make sure it looked "manly." She did good. I have to respect her because she's the same person who did my bone marrow biopsy. That makes her the only person in my life who has taken a piece out of me. On top of that, she's an amazing professional and an amazing person.

Also in the picture is a voodoo doll that a friend of mine brought back from Haiti. He was there on a mission trip with his church and thought we could supplement my care with the voodoo doll. We did perform a short voodoo ceremony on "the alien."

I was examined by the Nurse Practitioner yesterday and she confirmed that the spleen is back to regular size and there is no cancer on it right now. She confirmed that "the alien" is still in there, but is fading away. Only the "hot spot" is left and that is what the current treatments are for - to send it packing.

Today, is first day of Chemo Camp sleep over (yesterday was a Chemo Camp Day Camp session). My Nurse Practitioner told me to not be worried about it and that things will be fine. Good enough for me. She did say that possible side effects may be nausea, hallucinations (can't wait for those), agitation (so if I say or do anything to you that seems "mean" while I am in the hospital, hang with me), and drowsiness (I never turn down a good nap). If you come visit me in the hospital (remember, if you are "feeling puny," it would be best that you wait until you are feeling better to come visit as my blood counts will be down) and I am not in the room, hang out a little bit as they want me to be on my feet taking walks every hour or so. No marathons, but some activity to avoid blood clots that could result from laying still and all that stuff. All of it preventive - not something to obsess about. I look forward to skewing the reaction statistics with this recipe. My main concern is that the nursing staff in the hospital will be as cool and fun as the nursing staff at my clinic. We had fun yesterday.

To my Jewish Family: May you have a joyous Passover.

"See people rocking -- Hear people chanting -- Feeling hot hot hot
Keep up this spirit -- Come on let's do it -- Feeling hot hot hot
It's in the air - Celebration time
Music sweet - captivate your mind
We have this party song - This fundamental jam

So we go rum-bum-bum-bum
Yeah we rum-bum-bum-bum
Feeling hot hot hot -- Feeling hot hot hot - Oh Lord" - "Hot Hot Hot"-Buster Poindexter

Wednesday, April 8, 2009

Why Not The Baldwin Sisters Recipe?

For those of you who do not know of whom I reference in today's title, I refer you to the TV show, "The Waltons."

Today starts my new recipe of chemo treatment. It's known as a RICE Treatment. The previous one was a CHOP Treatment. Sorry that I have no links for you to refer to. I looked on the internet and if it isn't linked to my clinic or the American Cancer Society, I can't recommend the information.

Anyway, it would be cool if I was getting Miss Mamie's and Miss Emily's recipe instead. It still would require a hospital stay and some of the side effects would be similar. The benefit would be that I didn't care that I felt bad.

If the previous paragraph upset you and you think I have some bad tendencies, rest assured I was only playing it for the humor (see previous posts regarding my use of humor).

With that, I'll end with lyrics from my friend Skippy's favorite rocker of all time (he says with tongue in cheek)! Skippy won't care, his Tar Heels won the National Championship in Men's Basketball. He's still on Cloud 9.

"Champagne for breakfast and a Sherman in my hand.
Peached up, Peached Ale, never fails.
Must have been a dream I don't believe where I've been.
Come on, let's do it again.
Do, feel like I do?" - Peter Frampton

Tuesday, April 7, 2009

No One Has Ever Confused Me With John Travolta

Except for my fantastic dancing abilities. But enough about that.

Some folks have asked me if I will be allowed visitors during the hospital stay portion of my treatment this week and during the second one three weeks from now. They had concern that since my blood counts will be low, that I would be kept in isolation.

I will be allowed visitors and the only reason I would be kept in isolation would be to prevent me from annoying other patients. I will be in a room to myself due to my low counts, but that does not prohibit visits. However, if you are fighting a cold or virus of any kind at any level, I ask that you not visit and I will consider it your way of supporting me. Even if you think you have an allergy and are not sure, it would be best that you not stop by.

You can call the the hospital patient information number (804-330-2119) to verify if for some reason the doctors and nurses decide I can't have visitors. Currently, the plan is that I will be admitted on Thursday (April 9). I'm not sure what time I will be "checking in." I'll know that tomorrow. I am scheduled to be released by Friday evening, Saturday morning at the latest. I do not know what room number I will be in. I'll find that out when I get there. In addition, once you find out what time I am scheduled to check in, you may want to wait a couple hours after that before you try to contact me. I will have my cell phone with me if you can't get through on the hospital line. If I don't answer the cell phone, that means I am talking to someone else in my room or that I am being treated by the hospital folks. Leave a message and I will get back to you.

As far as the visitation policies when I am at MCV for the 3 week stay later on in this process, I do not know that yet. I will once I meet with them in a week or so.

"Though my eyes could see I still was a blind man
Though my mind could think I still was a mad man
I hear the voices when I'm dreamin',
I can hear them say
Carry on my wayward son,
For there'll be peace when you are done" - Kansas (for those of you who dislike 1970's rock music....tough)

Monday, April 6, 2009

I'm A Big Boy Now...

....even though my Nurse Practitioner is threatening to "bust my chops" a little bit when I see her on Wednesday to get my hospital admission papers. I'll fill you in on the details later, but I'll play her game. After all, she's a Hokie fan. It's not like I need to be scared of her or anything.

Yesterday, I did complete some "adult" forms (i.e. Advanced Directive and stuff like that). Every time I go to the hospital, they ask if I have one. Was feeling like a slacker because I didn't. Once I completed it, I was glad I had. Not that there are any dire circumstances facing me, it's something that is wise for anyone to have on hand.

Oh, just to have fun, one of the two teams playing tonight for the Men's NCAA Basketball Championship will lose to the other one. However, Maryland beat both of them in the regular season.

Bo has some scans coming up tomorrow to see how he is progressing. There is anxiety while they wait. I'm sending the following words to them that I found on the website of Virginia Cancer Institute (where I am being treated). Pass it on to anyone you know who may benefit.

What Cancer Cannot Do
Cancer is so limited…
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot eat away peace,
It cannot destroy confidence,
It cannot kill friendship,
It cannot shut out memories,
It cannot silence courage,
It cannot invade the soul,
It cannot reduce eternal life,
It cannot quench the spirit,
It cannot lessen the power of God.

Sunday, April 5, 2009

Being Taunted By My Peeps

Some more Peeps brethern showed up at my house yesterday (Thank you Easter Bunny).

They are taunting me knowing that I can't consume them until next Sunday (since I gave up sugar snacks for Lent and all). Trust me, if I wake up at 1:30AM on Easter Sunday, there will be a snack.

The Nurse Practitioner said that I may not be allowed to attend church on Easter Sunday pending the status of my blood counts. If not, there may be a special Easter service at my house involving the playing of "Jesus Christ Superstar" and the "Hallejujah Chourus" from Handel's "Messiah." Then, a communion service with the Peeps.

Saturday, April 4, 2009


P'scuse me again...there are revisions to some previous information. Don't be worried that I'm not getting correct information. There is a lot of information to process in all of this and sometimes it gets confusing.

I learned yesterday that the new chemo recipe isn't a more intense infusion of drugs. It's simply a different recipe with the focus of........"CURING ME!" That's right. You read that right.

I also learned what happens to "chemo fried" cancer cells. The body disposes of them.

The cancer that was on my spleen and liver........GONE!

All that is left is a small, intense activity of cancerous cells that the new chemo recipe and stem cell treatment have the significant potential to wipe out (there are never any guarantees with cancer treatment).

The nurse practitioner said the likelihood of side effects is the same as what I was facing with the previous recipe. She shared a story that the worse side effect she had witnessed was with a patient who would have hallucinations (She said it was a rare side effect). should worry! Greg Frazee having hallucinations. If you aren't a praying person, I bet you are now!

My next book report will be on David Plotz's, ""Good Book: The Bizarre, Hilarious, Disturbing, Marvelous, and Inspiring Things I Learned When I Read Every Single Word of the Bible." I look forward to reading it.

Friday, April 3, 2009

"Ground Control To Major Tom"

David Bowie...crazy man, but I do like his music! I mean, how cool is it that he did a duet with Bing Crosby? It's one of my favorite songs of Christmas.

Got a call from the doctor yesterday confirming that she had seen the final pathology report and it confirmed her assessment. She also consulted with the doctor at MCV and he was in agreement with her assessment.

Some interesting information from that call:
1) My cancer was pretty advanced when it was diagnosed and some of it had gone into my bone marrow (but it's not in the bone marrow anymore).
2) I have responded well to the chemo treatments and there is but a small "live" portion left. The doctor's words were, "There are some minimal residual cells that are compatible with lymphoma." It has very intense activity. Left untreated, it is very likely it would start acting up and multiply again. How quickly it would start acting up is an unknown. Could be weeks, could be years, could be never.
3) If I was 30 years older, they would probably not treat it and just keep a close eye on it.
4) They are very confident that the new "recipe" of chemo will clean it up.
5) I will start the treatment on Wednesday, April 8 at Johnston Willis Hospital. I will have one day (April 8) of treatment at the clinic I regularly go to and then the next day (April 9), I will be admitted to the hospital for the rest of the first round of the treatment. My length of stay there will be a day or two.
6) I will be meeting with the MCV folks in the next couple of weeks to get the details of what they will be doing.
7) I will be attended to by the doctor on call when I am in the hospital next week. I asked my doctor if she had prepared her colleagues for what they were about to face.
8) I will eat everything on the plate they give me at the hospital (unless it's really nasty fish or a cauliflower type of vegetable).

Tomorrow is a visit with the Nurse Practitioner for further review and the signing of consent forms to begin the new treatment.

How and when did this adulthood responsibility thing sneak into my life?

Thursday, April 2, 2009

I Read.....

...that April is National Humor month. Good thing. (Picture note: "Calvin and Hobbes" is my favorite cartoon series of all time. I have all the books.)

I was talking to the one of the friends of mine who was with me the night that I was admitted to the hospital. In our conversation, we came to the conclusion (actually I came to the conclusion - she already knew it) that I deal with stress through invoking humor. Several friends have told me, "I don't think I have laughed so much about cancer as I have with you."

Don't take that comment the wrong way. If you do, lighten up. My view is that since it's my cancer, I can do with it whatever I want. I would NEVER make a humorous comment to someone else dealing with cancer unless I was given permission. Then, I would tell them I have a wealth of material for them. I see the therapeutic value of humor as part of the treatment. It's not ignoring anything. It's knowing there is hope to be cured and that there is hope for a cure. I've read that a good sense of humor is a sign of high intelligence. Some of you may dispute that solely on the basis of using me as your point of reference.

The pastor of the church I attend mentioned in this month's newsletter that some Orthodox churches get together on Easter Monday to tell jokes and share humor. It's a celebration of the Resurrection. Pretty cool.

Here's the irony I see in next week's chemo process. I will be admitted to the hospital on Passover. Friday, I will be lying prostrate in a hospital bead with needles stuck in me. Saturday, I will be waiting to see how I'm dealing with the new drugs in me. Easter Sunday, I intend to rise up and go to Easter Service. "Now that's funny, right there. I don't care who you are."

As I've said to others, if you have any good cancer humor, pass it on. Let's use our intelligence to kick this thing's butt!

Updates: Bo continues to amaze his parents. Hunter just had his first round of the two medicines on Monday. But he was able to go to school for a whole day and even went to after- school care! Jay's spirits are good, but has a tough fight ahead of him and he will do it with humor and grace. His laugh can always make me laugh.

Wednesday, April 1, 2009

Ain't Got A Barrel Of...

...information about myself today, so "fuh-ged aboud it," here's some humor from Steven Wright.

I intend to live forever - so far, so good.

If Barbie is so popular, why do you have to buy her friends?

Eagles may soar, but weasels don't get sucked into jet engines.

Dancing is a perpendicular expression of a horizontal desire.

When I'm not in my right mind, my left mind gets pretty crowded.

Boycott shampoo! Demand the REAL poo!

Who is General Failure and why is he reading my hard disk?

What happens if you get scared half to death twice?

I used to have an open mind but my brains kept falling out.

I couldn't repair your brakes, so I made your horn louder.

Why do psychics have to ask you for your name?

If at first you don't succeed, destroy all evidence that you tried.

If at first you don't succeed, then skydiving definitely isn't for you.

A conclusion is the place where you got tired of thinking.

Experience is something you don't get until just after you need it.

For every action, there is an equal and opposite criticism.

The colder the X-ray table, the more of your body is required to be on it.

The hardness of the butter is proportional to the softness of the bread.

The severity of the itch is proportional to the reach.